Oh yesterday

The disclaimer of this blog warns the readers that my main motivation for this blog was so that I could have a platform to air my grievances. Today I am taking myself at my word and doing just that.

Puffy-eyed as I am, from a night of crying and thinking and crying, I am going to make my self squint through the eye-ball-falling out stinging for no other reason than to complain about the day that was yesterday - particularly yesterday afternoon.

Readers of this blog know that Erin started a new school at the beginning of the year. A Catholic school with the motto 'Love one another' - and so far it has delivered on this promise. No, still delivering. I can't fault the level of communication nor the action that both teachers and principal take when the kids display less than respect for each other. As a highly sensitive person (who displayed many of the Aspergian traits as a youngster) I have always been concerned witht respect, I speak nicely to other people and really, I expect the same in return. - Gee that sounds trite.

Cue lunch time yesterday, in the school's playground, Erin is playing a game with three other boys. This game, somehow,  involves skipping ropes. Erin is on one 'team' with another boy 'against' the other team. However, Erin's team mate dejects to the other side and all of a sudden, for Erin who may not have been able to 'read' the signs, he is now one against three. The other team wraps two skipping ropes around Erin, pinning his arms to his side (his teacher and I got a very well-acted demonstration of this in the afternoon as Erin was non-verbally explaining how he hit his cheek).

Erin used his 'words' to tell the boys to stop. Then after he had fallen over his anger exploded and he managed to wiggle free and the chase the boys until he 'got puffed'. The teacher on duty then took him into the hall nearby where he expressed his full anger and distress.

One thing that strikes me about this incident, is that it is almost redundant as to whether or not there was malice in the boys' motivations. It does not matter if there was because Erin would have read this situation in the most threatening and terrifying way. I know because I would have done the same. Erin gives all situations the most stereotypical reading. He has watched movies and cartoons, he knows 'violence' when he sees it. His teacher knew this as well and mentioned to me that he might have nightmares, but really, when I picked him up from school a couple of hours later, he was still in that nightmare.

This story is long and so I'm going to skip forward to an hour and a half later, where I, Erin and his teenaged step sister are sitting (well Erin is doing everything but sitting) in the waiting room of the local  doctors' office. It is taking everything that I have to keep Erin from randomly opening doors, locking himself in the toilets, and chasing after a woman that he was sure was his beloved aide. Forty minutes later and just after I had convinced Erin to have a look at the pictures in a National Geographic magazine, the doctor called out my step daughter's name and we filed into the room.

There were three chairs. All of us except for Erin took one. Erin, instead, stood in the middle of the floor looking intently at the pictures in the National Geographic. The doctor gave him, and then me, a strange look, which I didn't think too much of, being too relieved that Erin was quietly absorbed and we may actually get through this.

However, the doctor seemed to think that we needed an extra long appointment, and talked on and on, all the while looking over at Erin who, after five minutes, had decided that the pictures were no longer as interesting as different parts of the room. I contained him as much and as quietly as I could while listening out for important bits of information that I would need to relay back to my partner about the medication that my step daughter was resuming.

At one point the doctor got out some 'rats' (of the rubber kind) to keep Erin occupied. But, really, he was not being noisy, he was being odd, and that's what the doctor was distracted with. I saw it all over his face when Erin was looking at the National Geographic magazine.

Erin grew tired of the toys after a minute and put his hand out to open the cupboard from where the doctor had produced them (I should say that by this point Erin had not muttered a word). I quickly got up to stop him, while, at the same time the doctor said, 'if you keep doing that I will diagnose you with ADHD'. I wasn't sure that I had heard him right so I said, 'I'm sorry, what did you say?', walking back to my chair, directing Erin to it with my hand. He said, 'It is as if he has ADHD or something'. I said, 'He has Asperger's', and straight away the doctor saw his mistake and started saying sorry. 'I shouldn't have said anything' he said looking at my step daughter, 'probably not', I said.

I felt my face go extremely red. It is at these moments when I wish that I was a different person. I wish I was the person who is out-going and strong (well I am strong but in other ways), who could have made a joke at that point, in fact, I wish I was the type of person who seemed threatening enough that the doctor would never had made remarks about my son - in front of him and his step sister.

Erin moved toward the door - he knew it was time to go - the doctor rapped up, but really he had been repeating himself for a while, and he said 'good bye', and me? well I forgot my manners, or, if I was to say anything it would have been drenched in the tears that were welling up. I walked out, without saying a word.

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!