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.

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.

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.