Shared attention

Anyone with an AS child knows that this capacity is severely limited in their offspring.  It's a cause for great celebration whenever a breakthrough is made.  I'm used to working on this with Primo, but as always I'm rather more confused when it comes to Secundo.  Rather than a diminished capacity, S has always seemed to not have room for another perspective alongside his own; he's been so consumed with the need to be in control that whenever we actually do something "together" like read a book, I feel more like a tool in the process.  The alternative is that "together" feels like a competition; if I try to model something or draw attention to something, I get that the same thing back; OK Mum, you've told me about the penguins, now I'm going to tell you about the penguins ... There is no relationship in that.

But now, a few weeks into the new school year, my youngest son is hungry to sit down with me and look at books or TV shows together, in the traditional meaning of the word.  He smiles, makes eye contact, shares the moment, the experience.  I don't get the impression that it's something he's just learnt, I feel like it's suddenly become safe, like he's been experiencing it or watching it happen at school, and he's put his mind to extending it to home, with Mum, with whom it is presumably particularly pleasurable (Mum as ally rather than sparring partner).  It's as sweet as honey.  It also makes me self-pitying -- the years without this fundamental, this cornerstone of human relationships.  I could just never get it to happen.  Now it's there and I don't know why.  If only I did, perhaps I could have unlocked it a long time ago.

That said, just a little afterword -- with every success, every step forward a child makes, a mother has to adjust to the incremental loss of dependence, even if it has been a tempestuous, draining dependence.  So this new phase for Secundo, and Primo in his new class so far happy and settled, meant that I was finally starting to settle in to my own headspace a bit this morning, really able to concentrate, but as time went on I was aware of something flitting past the corners of my consciousness, and then it was a bright flash like that meteorite over Russia the other day: I miss my little boys!  They are away all day and I'd so love to see how these happy little creatures are living their lives.  I think I'm allowed to feel that aren't I?

Non-finite grief

A pretty self-explanatory phrase; there is no end point to the sense of loss, but there are ups, downs, moments of prominence, contradictions.  P, my AS son, appears enough like other kids for the most part that the world around the family fails to see the problems, and encourages everyone to focus on the strengths, leaving his parents sometimes feeling quite bewildered and uncertain of themselves. Then, without warning, you are hit hard, knocked flat, by a most unmerciful sense of certainty.

I had to take P to a special out-of-school activity this morning, along with 2 other girls from his class.  It's a short course available to certain children who are considered to be talented in the area being taught; what parent in their right mind could find a problem here?  But from the beginning, P struggled in unpredictable ways. The staff were great, and I felt proud of him, as well as satisfied that he had managed the whole experience enough to engage somewhat with the course.

I turned up to drive the group to the venue for the final session. Traffic was heavy and the 5-minute drive turned into 15.  No hardship there; it prolonged my glorious conversation with 2 lovely little girls about everything from Enid Blyton to Gangam Style.  Whilst enjoying the interaction for what it was, I was simultaneously modelling for P, as well as working to provide opportunities him to engage as well.  His responses were minimal and generally unenthusiastic.

We got out of the car and they all went about their business while waiting for the doors to open; I hung around till they went inside.  P to his credit lined up with the boys playing 4-square and got a turn, but it was such a fragile-looking success, it was hard to watch.  I kind of imploded.  I realised that I am utterly, utterly starved of so much that should be taken for granted; emotionally, life with a little AS boy is so austere. So much of myself is on hold, so much that I wish for from him is not forthcoming.   There was nothing conscious, nothing analytical about any of this: the emotions just tumbled, tumbled out without me understanding or having any control. The tears started to roll.

And that, for the uninitiated, is non-finite grief.

"Professional Support" and the Book Trade

I had a strange realisation today.  My latest bruising encounter with the education system (more later) led me to mull over all sorts of things today, sifting through experiences and discoveries to try to find a way to communicate more effectively with "them", to be taken seriously.

I went back to "the beginning"; just over 5 years ago when, 7 months pregnant, my 2-year-old was diagnosed with autism by a pediatrician in an office at the Children's Hospital.  We left with a recommendation to see a speech therapist and little else.

I went home that night and got on the computer, looking for information.  Where did I look?  Amazon.com.   Today is the first time that I have wondered why on earth I did that?  Because I had no idea what organisations existed; Amazon grouped books together, sometimes offered reviews ... it seems utterly pitiful now, despite the fact that it worked.  I only read one book before S was born, and it was a fantastic book that happened by some enormous coincidence to be located at my local library, all the more extraordinary since I don't know a single other person who has even heard of it: The Science and Fiction of Autism by Laura Schreibman.  I'm sure this is not the first time I have mentioned that book in this blog. But it is the first time that I have felt outraged that the diagnosing specialist could not have even put a pamphlet in my hand with a summary of what the disorder was known to consist of, or even better, a support group's contact details.

As it happens, it was several more years before I picked up anything that referred to Asperger's Syndrome, because no-one explained its relevance and I was barely functional enough with two difficult infants on my hands to process any information.  So instead, when I was able to read anything, I tormented myself with information which was in many ways of only tangential relevance to my son.  Certainly, with some guidance, I might more quickly have understood that he would keep developing, changing, and that there was much that we could do to help.  Instead there was fear, fear, fear, and grief, which there would have been anyway.  But the fear might have diminished if it hadn't taken 2 years to find a pediatrician who regarded it as part of her role to support the parents.

I feel a surge of activism coming on.  More next time on my experience today.

Neurotypical missionaries?

Well, this is likely to be rambling and half-baked, especially as I am trying to compose it in between attending to S who is under the weather with a cold. But I have been trying to clarify for myself, for some time, exactly what I am doing for P, my AS son. Deborah Lupton describes, in The Emotional Self, "the observation and monitoring practices of the human sciences [which] construct the notion of the 'normal' self against which people are urged to measure themselves. If they are found to be deficient, individuals are encouraged to work towards achieving 'normailty'" (93). Alongside this, she notes that there is an increasing focus in contemporary western culture on "the confession of one's innermost feelings, dreams, and fantasies to other [as] a major part of the strategies of attaining self-knowledge, directed at the 'showing forth' of the 'authentic self'" (96). The focus on emotions and intimacy, and the professions that have built around these concepts, is enormous in the modern western world. And it's fine by me; I seem to have absorbed these lessons well and basically have no problem with them.

But they help me to begin to articulate a dilemma concerning my AS son's development. The notions of subjectivity that Lupton identifies, and the techniques designed for obtaining that kind of self-experience, seem almost antithetical to the way the AS people I've encountered function. Is my task to assist P towards this version of selfhood? Do I assume that he is capable of achieving, to a relatively limited degree, this kind of "self", and the more I can help him with the better for him? Or do I do it so that at least when he is older he will have some rudimentary tools for dealing with others who value emotions in this way? In some ways, I've painted a false dilemma because I've already had the tremendous good fortune of encountering the work of Stanley Greenspan, even before I knew that autism had any place in my life. And I am currently, with great excitement, making my way through The First Idea, the book he co-authored with Stuart Shanker. Their point is precisely that although autism has a biological basis, individuals can be guided through certain essential stages of emotional development even belatedly. In this view of autism, affective knowledge is not being foisted upon someone who is fundamentally at odds with this way of understanding the world; rather, access to this essential feature of functionality is opened up. Because it is not emotion for the sake simply of feeling; for Shanker and Greenspan, emotion is the key to symbolic thinking. I am finding this to be enormously fertile ground for navigating my way through the various "interventions", "therapies" and "supports" available to my son. And inevitably, it affects my thinking overall about who we all our, what notion of "self" we live with, how we believe ourselves to function. And I hope that I will be able to develop these ideas and have something a little more articulate to say down the track.

Two confessions

Here are a couple of things that must sound dreadful. My day started with me just flattened by the emotions stirred up during S's "mini-assessment" yesterday. I became more convinced that the psych's suspicions were right, that I had just been interpreting things with an inadequate framework for understanding AS. I was sobbing before I was out of bed. I felt incredibly bleak. I had to start adjusting to the new reality taking shape before me.

S didn't want to go to kinder as usual, and P was fighting going to school. I had nothing in the tank; I told them there would be a new toy if they went. Immediate change of attitude; S even went and got himself something for "show and tell" (no-one has discussed this with him, he must be copying his brother's routine from school last year). He apparently had a terrific day, played really well with a new boy, and when I arrived he was happily playing with a girl he knows quite well, even if he was telling her she was dead for not following some crucial instruction (so he was mimicking a computer game like P does). He told me he'd played with everybody. He seemed relaxed, happy. I should have been happy, and I was really, but here is the dreadful-sounding part; I almost would have found it easier if he'd been the unhappy, mal-adjusted child that I'd braced myself for. At school pick-up, I found myself with another lovely son. We had to bring home a friend of his whose father couldn't get there on time. All 3 boys were happy and well-behaved together.

I do not know what to think or feel. On top of this, Q has had to go to a work function tonight, and I always pace myself carefully on such evenings. The boys had a lot of computer time, a lot of leeway to play, were up a bit later so that they'd be just that much more tired when I tried to get them to bed. The next dreadful-sounding bit; sometimes I feel almost too nervous to do things with them. They are so unpredictable, I get confused, I get drained, I get frustrated, I get angry. I don't know what to expect, and sometimes I just hold back and try to make it to the end. On nights when it's just me like this, I wonder how single parents cope, I wonder if I make more sense to them, or if maybe I'm not as alone as I feel.

"Stupid Pooheads!"

Why should this insult hurled at yours truly delight me so? P has been trying ever so hard for a few months now to get angry, as opposed to losing control. When things are really not going his way, he puts on quite a pantomime of pouting lips, crossed arms, hitting or even throwing things. Trouble is, he looks incredibly cute because he's really not very good at it; all the more reason to play my part, put on a stern, disapproving look, and let him go for it. And after my hand-wringing about the lack of connection I sometimes feel, these outbursts are characterised by his worried little eyes frequently meeting mine to see whether he's gone too far! I gave him a great deal of rope indeed; my instinct is that he needs to be able to do this if he is to have control of his emotional life.

Having brought to an end his pre-bed play session with S, his response was one of these performances. That in itself represented progress; generally, a play session cut short (as he felt this one to be) results in a melt-down; he is usually crushed by not having done everything he intended to do, no so much because of running out of time, but because of being distracted, and I think that that sense of disorganisation really upsets him. So yes, this was actually a good step forward for him. His brother's resistance was, unusually, weaker (just too tired I think), and so I focused on getting him to bed and warned the shouting gesticulating P to get into his or leave the room. He disappeared for a while, then stood in the doorway trying, I think, to look defiant with those searching, uncertain eyes. I told him to go where I couldn't see him (S and I were having a lovely cuddle), but instead he came in, uttered the aforementioned insult in an uncertain voice, and climbed into his bed. When S dropped off, I gave him a kiss and told him I loved him.

I had watched him "play" after school earlier with a boy he speaks about a lot, from a different class. I thought he'd made a mistake, that this kid did not in fact like him, as P trailed around behind the boy, who ran around making gun noises and looking at no-one in particular. To my amazement, on the way out, this boy asked his mother if P could come over for a play, and repeated the request to me. I don't know this child, but based on what I saw, as well as from what I've seen of P's other playmates, there seems to be a group a young boys with rudimentary social and play skills who are reinforcing each other's weaknesses rather than gaining skills from their more able peers. I don't mean to be completely negative about their play, but it does seem that the kids who are less able to connect spend time with other kids also lacking the ability; that might suit some, but others might flourish, I suspect, with some guidance. It may seem a long bow to draw, but showing me that he knows how to be angry, well, it is part of skilling up, of becoming more discerning about his lot, of being able to act on his emotions rather than being swamped by them -- isn't it?