Lower than despondent

Since I spend so much of my time lamenting the distress involved in mothering 2 boys with some big challenges, you think I'd be nodding my head vigorously when I get feedback suggesting that one of them is indeed disruptive and unequipped to participate in an age-appropriate activity.  Well now that it's actually happened, that's so far off the mark I feel like I have a split personality; the mother who writes this complaining blog, and the mother who feels like ringing the neck of the judgemental martial arts teacher who has basically told us not to come back.

It doesn't help that this came after the sense of disapproval directed at Secundo yesterday by another adult at the end of a playdate. And I kind of knew it was coming, so why it has knocked me quite so badly off my balance is a little surprising.  I suppose suspecting something is different from being told it bluntly. Suppose, indeed; I don't often get up in the middle of the night to sit at the computer, sleep is too hard to come by in our house, but after Primo woke up with a nosebleed as he does about once a month, my head was filled again with this little piece of news, which then drifted to merge with all sorts of other senses of failure that I'm experiencing in relation to my parenting, a whole wash of self-criticism from my being unable to keep my home remotely functional, to the disastrous, fragmented eating habits of the household, to the sense of having screwed up my little boy's life pretty much from birth, probably stirred up by the OT yesterday probing a little about his infancy, looking for more insight into that impulsive anger of his.

The stupid thing about this class is, it was in many ways a nightmare.  I bought the classes at a charity auction and only found out after purchase where they were held; across town just before peak hour.  Sometimes it took an hour to drive home, almost double the time to drive there. After a term of driving across the city straight from school, having to settle Primo in a different part of the facility and barely making it there on time, I've watched Secundo dance around, wobble, throw himself of the floor, and generally move compulsively in a way that clearly irked the teacher of this very disciplined, well-behaved group.  I spoke to his OT, I even spoke to Primo's gym teacher, who specialises in kids with disabilities.  Because of the rush in getting there and the class immediately following, I did not speak to the class teacher, so I can't blame him entirely for his reaction.  But despite all this, Secundo was loving it.  After years of trying miserably to get him to participate in any kind of group, this is the one he clicked with.  I could see he was really responding to the strongly structured format, and glowed with pride when he sat down amongst slightly older kids who simply included him as one of the group.  And he's strong, it was clearly good for him to be letting that energy out with some powerful kicks.  He was doing his best, but that was hard for the unfamiliar eye to detect.  The end of term came, and he was adamant he wanted to continue.  On top of the logistical difficulties, it was pretty clear to me that the teacher found him frustrating, although Secundo didn't seem to pick up on that.

I couldn't just abandon the whole experience, so I found a local class which his Dad took him to this morning.  He loved Dad going, but the class was more than twice as long with only one other child his age.  He did not click with it.  With resignation, I sent an email asking to rejoin the class he's been going to, only to get a curt and unfriendly reply.  I had a kind of out-of-body look at myself sobbing because my child didn't quite cut it in a martial arts class, thinking lady, you've got to lighten up.  If it was in isolation, maybe.

I found another school on this side of town and have sent an email asking about availability.  If they have a place, I will present it to him as a fait accompli; we are changing because the other class is too far away, and, bonus, Dad will be able to go to the new place as well.  If they don't take him, I just don't know. We considered telling him he could only go back to the other place if he stopped mucking around, in the hope that he would draw on his reserves of self-control and rise to the challenge, but I suspect it's more likely that his self-esteem would truly suffer and the rest of the household would go through the ringer in the process.  I'm sure as hell not going to tell him that he's not good enough, but he's so rigid about many things, this could truly be the end of the whole experience, and I want so desperately for him to find something fulfilling for himself that he can take some pride in and experience the joy of developing skills ...

A big part of why I take such things to heart goes back to problems I articulated when I started with this blog; I don't really know what I'm dealing with.  I don't believe I just have a quirky kid, don't think I ever did, but nor do I believe I have a second ASD kid, despite some recent inferences again from the OT.  But the world does not come together for him in ways that I intuitively understand, and as time goes on I feel increasingly as though I'm failing him.

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.

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.

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.