Friday, April 8, 2011

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.

Sunday, February 27, 2011

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.

Monday, January 31, 2011

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.