Pushing and shoving

The meeting with P's classroom teacher and the early years co-ordinator has come and gone.  Monitoring my own performance, I'd have to say I'm finally learning.  I did push my agenda yesterday, probably got too involved with my own thoughts at times, but at crucial points where I would normally feel uncomfortable about being "pushy", I didn't back down.  I don't think I've changed the face of the education lanscape, and with the benefit of hindsight realised I missed some opportunities to make more concrete demands, but I do believe I have made some fundamental alterations to their understanding of what P needs to be included and extended at school.  I was still strongly receiving the message that it mustn't be "extra" work for his sake, so that he is not stigmatised, but I feel fairly sure that this was their strategy for avoiding extra preparation on the teacher's part, as was the ever so nonchalant suggestion that feedback on some of what was discussed could be fitted into the school report (thus avoiding these apparently dreadfully onerous face-to-face meetings).

Q and I have had a crazy few days and so have not had a chance to debrief properly.  He did, however, tell me he thought I had "thrown" the co-ordinator.  Once upon a time I would have been disconcerted by the thought that my attempts to share information and work together had caused someone discomfort.  This time, I felt like that was a little independent confirmation that I had shifted the agenda a bit.  It is a big learning curve that the staff there are not really willing to embark upon, so I hope that my persistence has gotten through to them just a bit.

"Supporting" the AS child at school

Since P started school, I have battled my own anxieties about being insistent and making demands.  Nearing the end of the second year, I have come a long way, but I have certainly not mastered the art of advocacy.  A meeting is scheduled next week for which I am assiduously preparing, hoping not fumble yet another opportunity for supporting my son, by making those in charge of his education understand what he needs.

At the beginning of this year such a meeting was held, at my instigation. Everyone smiled at me. The new teacher seemed nervous; she had clearly never had an AS child before. She was handed a book by the teacher who co-ordinates the disability kids; no-one asked us if there were any materials we would regard as helpful.

There was lots more smiling, laughing, praise for my boy, how well he was doing. Whenever I tried to say, "that's great, so perhaps we could start extending him further", and gave an example of an area where he had difficulty, I was politely told by the person in charge, repeatedly, how many kids have that problem, how he doesn't stand out. This same woman talked to the new teacher about teaching him to recognise facial expressions. I tried to point out that he can do that fairly well; it's relating those expressions to internal states and other relevant connections that he needs help with. But she insisted on talking about him as if he were a little robot needing to be programmed with bunch of discreet emotional tags which he will somehow miraculously be able to employ just as his NT peers do. Actually, I don't think she thought that; I think she assumed that he, as any ASD kid, just has no hope of getting that far, so pictures of angry faces is about as far as it is worth going; more would be a waste of the teacher's time.

We got nothing that counts in that meeting. It took me back again to that first workshop, how revelatory it was to see my 2-year-old for the first time surrounded by little boys with short attention spans and emotional volatility. I can't blame them for not understanding; the teachers really need to have their eyes opened as I did that day. But since I can't drag them off to a group like that, they could at least have an attitude of professional curiosity. I am so tired of feeling like I am being tolerated. I know a lot, I have a lot to offer, I can and want to work with them for my son's betterment.

At a subsequent meeting, I thought I'd learned my lesson and was a lot more forward in specifying what I wanted for P. An arrangement that I regarded as ideal for regular informal communication between the teacher and myself was organised, with the blessing of an autism specialist from within the education system.  Once that overworked specialist was out of view, however, the school attempted to renege almost immediately.  I was told that it was unfair for a teacher to devote so much time and energy to one student.

If I've learnt anything, it's to turn down the emotional volume as much as I can when they pull this kind of stunt.  So instead of sleepless nights, tears, helplessness, I've tried hard to focus on what they are not getting, how I can make them understand, and how I can push myself to keep asking even after I've been told "no, something that I am very bad at.  This is not to say that I've banished all emotion; anger and frustration are particularly hard to keep at bay.  I did realise though that all my attempts to do things in a placating, submissive kind of way are failing.  At the next meeting, I will make sure that they know that I will keep asking extra support for my son, all the way through his time at their school.

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.

Belatedly, the scorecard

I have neglected to report on the outcome of all the professional assessments that we endured in the first half of the year. And so, the scorecard for S: does he have AS or not? We now have, on the no side, two pediatricians and one speech pathologist; on the almost certainly not, one OT, on the fence but leaning towards the not side, one psychologist and one psychiatrist. We continue to see the psychologist who, without the distraction of the AS question, more and more identifies patterns of behaviour related to anxiety.

What I take from all this is that he is odd enough to raise question marks from all these professionals (although least from the OT, SP, and the Pediatrician who specialises in autism, who tend to see him as "normal" but with some regulation issues), but no-one quite knows what to say. It's kind of fascinating in a way. For me, I feel a slight sense of relief that no-one is sending me away saying my child is fine, it's all my problem -- that doubt about my parenting, I presume that that's not just my own pathology, that most parents share it to some degree. Other people have now seen his blocking, antisocial behaviours and confirmed that they need some kind of attention.

Having undergone this ordeal of professional speculation, it feels, happily, almost to be part of the past. He has discovered what the concept of "friend" means. He is having some play sessions with children his own age, and generally they go very well.

When lamenting the months of waiting before an appointment was available with the pediatrician of our choice, the OT to my surprise was pleased at the delay, saying that with any luck he'd have a huge developmental leap in the meantime and all would be resolved for the best. She was pretty much on the money, but back then, there was no way I could wait calmly for nearly 9 months to pass before this could be verified. One of the earliest signs that the tide was turning came a couple of months ago, when S and I went to the museum together. It was the outing of my dreams. We conversed; he asked question and was thoughtful about my answers. We were really, truly together. There was a tinge of sadness to all of this though, as he was particularly interested in a some stuffed animals, and wanted to know if they were alive. So I explained that they had died and there were some people who knew how to take the skin from an animal and make it look like it was still living. From then on, it was "poor bird", "poor horse", "poor lizard". Finally, we entered the ocean gallery and found ourselves in front of the giant squid. Two years ago he'd seen for the first time the video of the scientists measuring and then cutting out some part of its anatomy, to this day I'm not sure what. At the time he stared with big eyes and then said to me, "hurt?" I said "no". I don't remember if I told him it was already dead -- I don't know what I could have said to a 2-year-old who was quietly but clearly having a crisis. We watched the same video yesterday, and then the animation of the squid hunted by the whale. "Poor squiddly" he murmurred, turned to me, and hugged me with his heart and soul.

It sounds too trite, both psychologically and aesthetically, but I think that his nascent confidence with friends let him drop his defiant barriers and share this basic, fearful pain with me. This acknowledgement of vulnerability flickers in and out of sight, but on the whole, life has been calmer and happier for the whole household, largely because S seems to have emerged into a new phase of his life.

Feeling stalled

My uplifting return to my former pre-child existence was followed almost immediately by the school holidays and other responsibilities. This is thus the third week where I have experienced "days off", where I do what I like at my own pace. I'm always taken by surprise by the counter-intuitive effects of such relief; every time something in the world of child-rearing improves, every time I feel a release from some kind of relentless pressure, I expect myself to return to the coal face refreshed and energised. What actually happens is that I balk at going back at all, and find the descent harder than ever. And, being good at beating myself up, I feel guilty about it.

In theory, every week there should be one shortish and one longish day to myself. But P is missing his 4th day of school today in 4 weeks, and this particular day is -- yes, my long day off. So perhaps parenting has in some ways been a little harder than usual, and I shouldn't beat myself up too much, not to mention the ongoing need for Q to be absent for substantial periods of time caring for his elderly father. I have noticed, though, that I have much more energy and focus when there is another adult around. P couldn't go to gym the last 2 weeks, but instead of cancelling the babysitter for S, I had her come to help anyway. I found myself at the park with S on his bike while P played on the laptop in his bed. Knowing that someone was folding the washing & so forth, and that I didn't have to negotiate with 2 contrary sets of desires (in this case 1 child who finds movement in general draining, & one who is strong & craves more of it), I noticed just how much easier it was to get involved in the outing. On that note, S also continues to mature, and we are having more satisfying encounters in general. It all makes me wonder if I tend to shut down in sometimes in anticipation of the physical, mental and emotional exhaustion of juggling practical responsibilities with the communication and emotional regulation difficulties that both boys have.

On that note, memo to self; I might go off-topic sometime revisit life with chronic pain. There is also P's upcoming 7th birthday, a milestone age and a time to reflect on how we can support him as the social world of his peers picks up speed. There is much on my mind, but there still seems so little time to unravel it all!

Same person, different lives

I wrote this a few weeks ago.
I am half-way through what is, for me, a most extraordinary adventure. A return to the life I inhabited before having children, which has been all but scoured from my daily existence for nearly 7 years. And so I am away without them, for the first time, EVER, for a good week, presenting papers at not one but 2 conferences. The tumult of emotions that have accompanied this venture have drained me utterly. I can see my reflection in the screen of this netbook and I look so very tired and older than I thought. For me there is so little solid ground involved in this expedition: I have left the family that commands almost every unit of my time, energy, attention, affection, to place myself under the scrutiny of would-be colleagues, I suppose I could call them. I rose to the challenge of this because of a strong interest in the topic of one of the conferences, and added the other (which has just finished) because I felt that it would be good to make the most of the opportunity. But I am relying on old research rewritten with a new emphasis; nothing wrong with that in some ways, it’s just that I have so little sense of validity in my return to this fold. I have no formal affiliation, a minimal track record for my age, I am not paid in any respect (and I believe this matters), and because of my family circumstances, little of this is about to change.
Well, the response to the paper that I just presented I think was positive, but it’s not entirely clear. It consisted of a lot of intensely communicated advice from senior people in my field whose work I respect very much; what I extrapolate is that their attention demonstrated a worthiness in my work of their consideration, but the many helpful suggestions also suggested that they felt I needed in some sense to pull my socks up. It might not be quite that bad; after all, one of these people asked me to send a copy of the paper to him, another then asked if I’d do the same ... and I have had a slightly unrelated coup, in that in the days before I left, I had a piece accepted for publication by a journal which I am proud to be included in. This article I have been working on in dribs & drabs during the years at home with babies, to the point where sometimes I felt that I cut a figure of total ludicrousness. For instance, when S attended occasional care the year before last, I was physically and emotionally exhausted. I knew that leaving him there would rouse his anxiety and cause me more stress than it was worth. The saintly woman who ran the show, after years of working with stressed bubs of working mothers in long day care, was totally sympathetic to my admission that what I really wanted was just to have some mental space where I was not subjected to his voracious need for attention, and that I would rather stay quietly in his sight while he got used to being around other people in a new place. And so I spent many a morning perched in a patch of sun on the side of the sandpit working on precisely this article. And now it has crossed that seemingly impermeable divide between my chaotic personal life to the public domain – at least, it’s on its way.
But amid the emotions of wondering what I want from this trip and my battle with the anxiety with the legitimacy of being here, I found myself in an aeroplane with a crying baby a few rows away. It took me back to trips with my own, of course. Later, I made eye contact with this child after she’d cheered up. She mirrored every face, hand and voice gesture I made. That was enough to bring on the tears. I still, still, still feel anguish about this. Even though S now more or less officially does not have an asd (much has happened in the last few months and I will provide an update), he, almsot as much as his brother, has not had such a relationship with me in many ways.

teasing out understanding

Last December, I finally discovered a clinic that helps children with oral desensitisation. By a happy coincidence, we had just booked in to start sessions with a speech pathologist at the same place. Some discussion occurs, time goes by, funding options and qualifications cause a false start, but finally P was seen by an OT last week. I have barely been able to contain my excitement at the prospect of getting help with this. Looks like I'll have to hold it in a bit longer though. The session was disappointing in that the OT felt that he had "classic tactile defensiveness" and that we needed to start more generally rather than homing straight in on the food issues. Otherwise we wouldn't really overcome the levels of anxiety and avoidance that she feels are already present.

Well I said disappointing, but not unwelcome. This is why I try to keep him in contact with people who can help me see what might be missing for him, not just waiting for problems to manifest. So this is exactly the kind of information that I suspected that I would come across and needed to hear, it's just that the timing wasn't great, given how hard it is to live with a child who eats almost nothing, and a brother who therefore feels he can get away with a similar diet. It's pretty gut-wrenching, having your child's difficulties pointed out to you in detail. It has to happen, but there is always an emotional aftermath for me, every time I'm informed of a new detail in his profile of deficits.

In this mood, a few days later I watched another boy run enthusiastically up to P as he walked to class, place his hands on P's shoulders from behind and give him an affectionate shake. I didn't see P's complete reaction as he was a little behind me, but I think he basically shook the hands off, or at least shivered or physically withdrew somehow, perhaps briefly made eye contact and murmured something, then continued walking expressionlessly. The other boy looked surprised but took his hands away and fell in beside P.

I keep thinking about it. I think the other boy took the "rejection" well: he didn't get angry, or tease; he looked confused, but seemed to understand that his action was not eliciting the response he hoped for, and stopped; he didn't look as if he felt distressed, embarrassed at making a misjudgement, or anxious about the mis-match. On the whole he seemed to take it pretty well, although I can't know what he thinks of P as a result. Does he think that P still likes him? Does he think, "P doesn't like that kind of play, but we can do other things together?"

And what did it mean to P? He clearly registered the approach as unpleasant and made that clear. Did he understand that there was an emotional component in that approach too? I don't think so. Would another child have made a reassuring face as the other boy let go and walked next to him? Did P add this encounter to any other impressions of this boy, or did it just slip out of his mind as a random event? Such treacherous missed opportunities; how many similar episodes before a child gives up on him? So many things to learn, and how can it all be achieved? And is it asking too much for that to be the goal?

A few weeks ago I dreamt I was watching P recount an anecdote. He was confident and happy, and as a result many emotions flitted across his face with absolute ease, in synchrony with the events that he was describing. In my dreams I got to see the carefree, communicative child that I hope will develop as much as is possible. That would not only be gratifying for me, but a watershed for him.

from pillar to post

How many forms of turmoil can I take in a matter of weeks and still function? Since the "mini-assessment", with every day that went by, I became more sceptical, more relaxed, but keen to prepare S as best as possible and get the full assessment over with. That was until the psychologist cancelled about 90 minutes before the session; then I became considerably more agitated. This was compounded by her offhand acknowledgement that perhaps it was for the best, since she hadn't arranged for the paperwork that would allow us to get any kind of rebate for this assessment ... When she first brought that paperwork up 2 weeks ago, I asked her specifically to ring me if she had any difficulties so that I could make arrangements to see a pediatrician locally, & I also pointed out that I needed time to do this, so could she let me know as early as possible ...

So there was emotional suspension coupled with tedium and a dose of disappointment in the psych too. We were able to see a GP that afternoon to get a referral to the pediatrician who mercifully had a cancellation today. The GP did warn me that he couldn't guarantee that the pediatrician would agree to the assessment, so I then made calls & pulled together documents. So I sat last night, alone as Q is on an extended work trip, reading the point-by-point list of all the ways in which S resembles an ASD child. It was not good.

Then today we went to the pediatrician for what I thought was likely to be a rubber-stamping, with P in tow as well, home from school with a cold. I think partly from having him there, and partly because of the toy I told them they could have when we got home, we got pretty good cooperation from S. And so the pediatrician saw what I saw; that when he tried, S could do what was expected. Not only could he, but the Dr referred to the "richness" of responses, once he co-operated. But based on the history of angry behaviour that I'd given, the pediatrician announced that he thought that we were dealing with an attachment disorder and that we should see a pediatric psychiatrist.

Of course I was very business-like, but this was crushing. Finally, there it was; proof that I had in fact screwed my youngest child up. Attachment disorder. Luckily the babysitter I had organised for later that day (for S so that I could take P to an appointment) could come earlier. That meant that I could get away from my boys, I honestly felt, for their benefit, since I was so unfit. At least that didn't last too long. I took myself to a cafe for lunch & thought. And I soon came to the conclusion that I was not being dishonest, I was not dodging any bullets, but I didn't accept this theory. I know how stressed I was when I gave birth to that little boy with a newly diagnosed ASD toddler on my hands, but I also know that I mustered up my absolute best, and I know what he gave back. I know how much came from him, regardless of what we were offering. He has always been the same contradictory bundle of extreme clinginess and extreme independence. Some saint somewhere might have dealt with it better than me, but I didn't produce it, I know that.

And mingled in with this another huge wave of reservations. This is the pediatrician who diagnosed P originally. We did not go back for another session after that, partly due to his observations on P's "dependence" on me. He didn't like it. I foolishly mentioned that we co-slept, and he probably asked about breastfeeding (and I probably naively told him that P was an extended feeder, as I did of S when asked today). He felt it was therefore important to P to separate more from me, and gave us an ever-so-respectful dressing down about our co-sleeping. Any evidence of closeness seemed to suggest to him that I was holding my child back. We saw a specialist in ASD 2 days later and while waiting at the desk, I read his faxed referral, stating that the parents' concerns included "attachment". Well no, actually.

So in my distress it took a while for the reality to filter through that this man has some sort of attachment wheelbarrow to push. I really can't prove this, but I'm pretty sure that he saw my attachment parenting practices as something pathological. Once it hit home, I felt quite removed from the whole process. A few hours later, I managed an international phone call with Q who had listened to my earlier voice message and come to pretty much the same conclusion, bless him, not to please me, just his own gut instinct. We went back to this pediatrician today for convenience, and I can't say he's not doing his job as I think he basically got important things about both of these boys, but gee, you wouldn't want to ask him what you should do next.

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.

Sentencing postponed

It felt like I was going to be sentenced; for guilt, for failing to understand what was in front of me. And a sentence for S too; a label, a life of problems that I thought he would not have to know as his brother does.

In that mood I drove to the psychologist's. S was at his worst. For the half hour of driving he repeated incessantly 2 "jokes", barely pausing for breath. I turned up the radio, I sang loudly, to stop myself from screaming at him. By the time I found a carpark we were late, and I was frazzled. S was at his worst, blocking the psych's every attempt to engage him, although she made modest progress. Pretty much everything she saw and everything I told her seemed to confirm the likelihood of AS, but the fact that he also seemed unrelaxed, combined with a conversation she'd had with the OT who feels he's probably not, meant that she couldn't be sure. And so she decided to do a full assessment in 2 weeks.

I had to do some shopping this afternoon and set out with the lowest of expectations of him, only to discover him to be enthusiastic, co-operative, and fun to be with. I feel like I am going around the twist.