horrible

Long time, no blog.  So to pick up after many months, we seemed to turn a corner with S earlier this year; starting school seemed to help beyond anything we'd dared hope for.  But it turned out to be a honeymoon, and although generally he is growing up and more able to control his behaviour, we have continued to feel that the whole household is bound by his tyranny.

A week or so ago, at the end of the school day, he flew out of class pausing only to thrust his bag into my hand, and ran to the door where his older brother exits.  I hung back, as most parents do, and was chatting when P ran past squealing, chased by a thunderous-looking S.  Round and round they ran, and having hurt my back badly the day before, I was very limited in my abilities to break this spat up.  Eventually I was able to lay a hand on S's shoulder, to which he responded by kicking me in the shin.

Somehow we managed to get out of the gate, with S hurling insults at P.  A lovely, sunny boy from S's class skipped up beside him and started to walk with us, and I saw this as a good opportunity to shift focus.  I started asking this boy about the library book he was carrrying, which caused S to notice him and pay him some attention, but not to cease calling his brother names.  While waiting for the traffic lights to change, I commented that this boy's dog, walked by his mother right behind us, was wearing a coat.  As I said this I realised the dog was very old and also blind, and had a brief exchange with the mother about this.  S shifted from calling P a moron to yelling "poo dog" at his friend's pet.

Perhaps too aware that this whole shambling mess had been observed by another adult for the whole walk home, I stalked ahead silently, got in the door, and hauled S up to his bedroom.  He was completely taken aback, had no idea he'd done anything out of the ordinary.  I hadn't lost control, but I was angry and some switch inside me flicked to the open position and let it out.  Amongst the things I said, I told him that what he'd said about his friend's dog had probably hurt his feelings and was horrible.  I also exclaimed that I didn't know how he could manage to do so many horrible things in the short trip between school and home.

I ordered him to stay in the room for 10 minutes, at the end of which time I would open the door.  This all went to plan, and he came out a changed chid.  Totally pleasant, and seemingly relaxed.

It was, of course, my turn to feel horrible.  I felt I'd criticised him, and done the thing we most try to avoid: shaming him, thus damaging his already poor self-esteem, which could in turn only produce further long-term negative consequences ...  so maybe this calmness was nothing but an act, another layer of defence against the outside world, another barrier through which it would be even harder to get through and earn his trust.  But he really did seem calm and relaxed.  And cheerful.

The next day, I felt that if I had caused him to feel ashamed, I needed to point him towards some kind of way out.  I suspected, though, that too much from me would make matters even worse.  I brought up the big feelings that we both had the previous afternoon, and wondered again if his friend was upset.  I said if he wanted, he could say something to his friend about it, like he didn't mean to hurt his feelings, and maybe even say sorry if that seemed like the right thing to do.  I said it was up to him and didn't mention it again.  Leaving a 5-year-old to make those kinds of decisions without further dialogue -- well, it might all be futile, I'll never know.  But he was quiet, he listened, he didn't reject my comments.

And we haven't spoken about it since.  But he has on the whole been better behaved, and cheerful.

Maybe he's relieved to hear the worst?  Instead of responsible-parentspeak, he got some big emotions, but not out of control emotions, with some feedback.  And at least I didn't say he was horrible, I said what he did was horrible, so I managed not to break that parenting commandment.  So much of his behaviour seems to be about pushing people to their limits, about deliberately undermining situations, about refusing to do what is expected of him.  On the other hand, he has slowly been forming better friendships of late with his classmates, so maybe that is why he is more relaxed.  Maybe I should rename this blog "grasping at straws", because sometimes (sometimes???!!!) I really have no clue what's going on.

Always back to "labels"

Yesterday, I heard Bernard Henri Levy on Start the Week, one of my favourite podcasts, pontificating about all that is wrong with the world.  I've heard him speak once before on a very specific issue (a murder) and don't remember much of what he said; I was certainly not astounded by his fatuousness as in this latest instance.  The point where I switched off was when he equated modern, medicalised societies, which tend to eradicate the notion of "evil" in favour of a range of treatable pathologies, as "totalitarian" -- doctors controlling us all with little pills.

I had an epiphany of sorts about the burden that this kind of thinking contributes to my own very personal circumstances.  I suppose because to some degree I would be one of Levy's natural constituents, a leftie-type who values intellectual critique, almost reflexively suspicious of much that modern western capitalism "offers", always on the lookout for a bigger picture or a deeper issue.  I transpose his observation a little here from pills (although I could easily get worked up about that -- another blog topic perhaps) to the difficult distinction between personality and disorder -- the medicalisation of personality, I suppose.  Having a child diagnosed at 2 with a pervasive developmental disorder, I've had plenty of experience with this one.  I've now realised that I need to become more articulate about why I can accept his diagnosis, his "label" as helpful and don't see it as reductive, as some kind of denial of his humanity.  Again, the topic for another blog.

To wander away from my incredulousness at Levy's simplistic thinking, this question of whether or not to "label" one's child has been more burdensome with S.  This blog was basically born from this struggle, which often seems to boil down to: am I inadequate as a parent, or is there actually something unusual about this child?  It has been a terrible uncertainty to live with.  Only a few weeks ago, the psychologist once again made it known that she considers him to have ASD traits.  Whereas with P, being told this gave me a map to work with; with S, I feel the most gut-wrenching, paralysing confusion, because it just doesn't seem to fit, but I have no better explanation.

A few days ago S had a friend for a sleepover, a lovely, compliant, cheerful little boy who is simply not interested in conflict or trouble for trouble's sake.  It had a positive effect on my 2, whose behaviour improved a lot while he was here.  About an hour after he left, without any conscious thought process on my part, I found myself impulsively typing "opposition defiant disorder" into Google.  The contrast between the 2 boys was so striking that the term just welled up into relevance.  I've mentioned that  Q and I joke that whatever the diagnostic specifics of this term, it always sounded right to us, but we've never been encouraged by any professionals to see S as fitting with this profile.  But he does, he does, he does.  I've gone to site after site and he is so much the child they describe.  And I felt that same sense of being presented with a map; all the distressing crap that goes on in the day now has a name and even though we were pretty much doing what they recommend, we have greater understanding of why we are doing it, and so it gets easier to handle the disruptions, feeling now as if we are really on a path to changing his behaviour for the better.

So it could be that I've become a victim of Levy's totalitarian, medicalised society, that I can't function without a bunch of artificial distinctions about individual difference to tell me how I should behave.  But I also know that there is a huge qualitative difference between my settling upon these labels for my boys.  ASD is fundamental to a person's experience of the world; ODD is more or less a secondary condition that arises from other difficulties, usually ADHD I've discovered, but that I'm happy to say is clearly not in play here.  I could beat myself up well & truly over one of the other cited causes -- authoritarian parenting -- but I really do know now that that is simplistic as well.  I can certainly accept that we have fallen into bad patterns where stressed parents have reinforced these tendencies; that is the whole reason I went looking for help, knowing that I was losing the battle to have a supportive, nurturing relationship with my child.  We have more to discover, but this weekend, having both read through the most concise descriptions of ODD and its management, Q and I have experienced a calmness and a conviction that has been nothing but good for us, and will be nothing but good for our children.

'Tis the season to be ...

I wish I could say that my long silence was due to having nothing to say.  On the contrary, I've ridden a tidal wave of emotion due to events concerning P, all the way to crashing on the beach and surging helplessly beyond like a piece of detritus.  The waters subsided, and I picked myself up battered and bruised, dealt as I could with his needs, mine, and the external factors -- the repairs required after the disaster -- and have kept moving, trembling a little less with every step, trying to re-orientate myself towards the festive time that it is currently supposed to be.  And so the strong tidal pulls associated with S should not be so destabilising after the sheer force of the previous wave, but I've been left weak and I'm not keeping my head above water.  It seems that my holiday time with my family is somehow doomed, yet again, to be a time of uncertainty about my children's development and what to do about it.  Whereas having a name for P's profile of unusual characteristics has been immensely helpful, trying to define S along the same lines is causing me huge stress -- to resist is to deny him the same level of assistance, financially as well as practically, but to accept feels hugely misguided, like I would be guiding my family with a compass that I know to be broken, but it's a compass, what else have I got?

So there is just too much.  This is my last day to myself, as S finishes kinder today.  I have a few hours left to my own thoughts, in between many, many errands.  I feel all the sadness of the end of an era, vying with the sadness of knowing that I am about to lose my few windows to have some time to nurture me, vying with the uncertainty of knowing what the next few months hold for both boys, about to enter new phases of their lives, and this awful, heavy, stormcloud of a question mark bearing down on me and fogging up my judgement.

"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.

A strange calm descends ...

The mind is a fascinating thing, is it not?  I've been trying to figure out how I've gone from feeling markedly inadequate to the most calm and in control for a long, long time indeed, a real sense of being grounded, centred -- pick your metaphor/cliche.

I notice almost month by month how my boys are growing up and getting on with their own interests and interactions with less intervention from me; we all needed to get to this point so badly.  Nevertheless, forf a couple of weeks my habitual 2 days to myself were unavailable, and I became very tired.  In fact, I slept a lot, even for me.  There were some ongoing health issues, the usual disrupted nights with kids, but I was remarkably unrefreshed by the extra rest.

Is it a gender thing, or is it specifically me, that my reaction to this was to beat myself up?  To find myself hopelessly unable to cope with the day-to-day world and normal wear and tear?  That's how I was by the time I took both boys to a birthday party in a play centre not long ago.  A play centre; i.e., a place where kids jostle, knock, wrestle and occasionally shove each other, but where the action is generally good-humoured.  I hit a low as I watched P gallop like a big puppy towards any group of kids he liked the look of; he's so open, so warm, it's so hard to see the older kids pause with unfriendly expressions and turn their backs.  But even worse was watching S turn red with rage at every friendly attempt to play -- a ball thrown in his direction, a bump on the bouncing castle, a hand to his arm or shoulder ... I felt that some part of me was going into overload.  After what felt like an eternity of boy-monitoring, I walked away and sat down. It was too much, watching this inexplicable fury at a birthday party.

As it happened, after food, all the kids' mood changed.  Things got calmer, and S got friendlier.  A welcome surprise.

The next day I finally woke up and felt awake.  It was the last day of the school holidays, and I was to spend most of it alone with the boys as Q was visiting his father.  I don't know why, but I sat P down and had a talk to him about his diet.  I found pictures of food with protein, and I brought out small quantities of things he could choose from.  He ran away, he howled, he blocked his ears, he sobbed.  I admit that by the end my calm was exhausted and I felt angry and resentful at my failure to get him to eat, but I went shopping later and brought back a few other options, this time with success.  Very small, but success nevertheless.

In a variety of ways since I woke up that morning, I have felt more in charge again.  I don't quite know what has shifted; whether it is the simple overcoming of exhaustion (including remembering to take my iron supplements!), or hitting the bottom of that parenting spiral where I had to walk away from my own helplessness, or whether the boys' behaviour has shifted again in some fundamental way that I have yet to identify, giving me more much-needed mental space.  Whatever it is, more please!

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!