The bookends of my day

P spent the day at home today, just a little too tired for school on a hot, hot day.  So I walked S to school and chatted.  I was enjoying this as the conversations are usually more pleasant when it's just the 2 of us.  His birthday is soon, so parties, guests, and the ages of his classmates are very much on his mind.  I told him that one of his best friends was coming to his party.  He said that that friend had forgotten to invite S to his own party a few months ago.  He's said this before and I wasn't sure what to make of it.  I asked if he was sure he'd had a party; did he know anyone else who'd been?  Maybe he just had a birthday and no party?  He couldn't think of anyone, but was sure there'd been a party, and elaborated by saying he hadn't been invited to any of this boy's parties.

Aha!  I was glad to be able to contradict him; he had indeed been to this boy's previous birthday party when they were at kinder together.  Alas, it was a difficult occasion for me (I did talk about it in this blog, must put in a link), but thought he'd be happy to hear he was mistaken.  Silly me, imagine he trusted me that much.  He insisted he was right, I tried to jog his memory, persisting, gently, I thought, because it would cheer him up, but instead ended up with him telling me, "you're a liar!  You're a liar!  YOU'RE A LIAR!".

Fast-forward to pick-up.  As he came out I notice some kids carrying heavy boxes and realised the home orders for an icy-pole sold at the school canteen had been distributed.  S had been very keen to get some, but he and P didn't want the same flavour, I didn't want to buy 2 enormous boxes of the things, didn't get my act together to find someone to share with ... I let it slide, and I hadn't told the boys that.  He started to complain and I started to reply; at that moment another child's grandmother asked me a question and as I was replying to her, I felt the most almighty wallop on my backside that a nearly 6-year old is capable of delivering.

What a contrast with the intervening hours.  I warned P that this was no day at home playing on the computer, I had lots to do, he'd have to come with me, without complaint!  He promised that a long as he'd have access to my phone, he'd tow the line!  We went shopping in the heat and then I kept an appointment for my back (where he got the phone as promised).  As far as I'm concerned, we had a wonderful time.  He got to operate the ATM, the parking ticket machine, the coins that unlock the shopping trolley, the car central locking, the icy drink fountain at the gym, he picked his own morning tea, and on the way home shared his truly measured thoughts about the possibility of life elsewhere in the universe.  Then we watched a tv show together, and then I had to extract myself and do some tasks.    It was delightfully relaxed; P and I had space to just interact with each other.

How to explain the timing?

Primo is prone to blood noses, and they occur in the middle of the night as often as not.  This has sometimes been very frightening for him, but I'm often impressed with his calmness.  Since his father suffered similarly as a child, he is usually the front line for this kind of incident.

And so last night up they went to the bathroom to go through the ritual involving oddly twisted tissues, discussion of clots, monitoring blood going down the throat (which really causes P to lose it), and other details with which they are both very familiar.  I listened sleepily from the bedroom in case things took a turned for the worse and I was required. Being only half-awake and slightly too far from the bathroom to hear the words, I monitored the timbre of the conversation.

Blow me down; in the middle of the night, leaning over the bathroom basin waiting for the blood to stop, Primo was alert, talkative, and most striking of all, his intonations were the most expressive that I've ever heard.  For years I've listened to his rather monotonous mode of speaking (another source of non-finite grief that occurs in relation to the lack of facial and vocal expression -- perhaps I'll elaborate another time), and learnt recently -- and not surprisingly -- that intonation is located in a different part of the brain from other aspects of language.  But why, when I, perhaps most people, would expect a child to sound weary, and everything that that entails, did my son's speech sound so unusually fluid and musical?

Whatever the reason, it was delightful to hear.  And now I know it's there.  So exciting for him, and for me, I'm sure it sets off a little synaptic fireworks display in my brain, it feels so enlivening to hear.

Non-finite grief

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

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

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

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

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

Moments to treasure.

We arrived home from school this afternoon.  P sat on the floor and asked if I'd like to hear a song he's been learning in music classes; S lay on the couch and we clapped our hands together rhythmically.  Everyone was calm.  No-one ran to turn the TV on, nobody was grumpy or unhappy, nobody competing with anybody, no-one doing anything anti-social.  There have not been many homecomings like this.

Mentors

This will seem to come out of nowhere; it doesn't, but to untangle the thoughts about adults who influence children is too long-winded.  Suffice to say that part of my ruminating involved thinking back to adults who made me feel worthwhile in one way or another, and some surprisingly fleeting encounters from my teens sprang to mind.

Once was the family doctor I used to see in the portable building that constituted the local medical centre, slapped in the middle of a dead-flat paddock and separated from the government housing estate where I lived by yet more thistle-infested paddocks.  Minors are not allowed to see doctors unaccompanied by adults, but at 16, having been the victim of a physical attack that left me with debilitating headaches, I made a kind of stand for myself and kept an appointment with this doctor when the adult in my life refused to take me (another story for another day, perhaps).  After a flurry of sotto voce consultation amongst the staff, I was allowed in.  I was referred to a physiotherapist.

I don't remember whether it was before or after this that the doctor recommended that I leave home.  I think I partially persevered with this appointment because I already had a sense that she was somehow trustworthy, so maybe it was before.  But she certainly told me to get a scholarship to college and "get out of that house".  I've never forgotten it.

College wasn't my thing, but her perspective on my teenage world and the inference that she saw some sort of promise in me held me together in many ways.  I learnt at some point that she came from an accomplished family herself.  I thank her for getting out there and doing some good in more ways than she was trained for.

Another encounter was even more fleeting, but from around the same period of my life.  The German poetry contest.  I saw a bit of a Rilke poem on a blackboard this morning and it brought this memory back: students had to go to the German Department of the university at an allotted time on a Saturday morning and read the same memorised poem to the appointed lecturers.  Well, I had screwed up completely.  I was at my boyfriend's house, don't know exactly why, but I didn't manage to get myself to the university till well over an hour after the end of the competition.  I'm a bit shocked at myself when I think back to it because I was a very earnest little student.  It's a salient reminder of the juggling of so many intense experiences during those years... At any rate, someone was still kicking around in the department, a woman who seemed a lot older than me, who was good enough to go through the motions and at least listen to me.  It wasn't clear to me whether I was really still officially part of the competition or whether she was taking pity on a distressed and disorganised girl.  But I recited my poem, and she was moved, truly moved.  I forget the words, but she made it clear that after endless mechanical recitations I'd made it beautiful for her again.  Weeks later I got a certificate commending my performance (lots of those got given out), but the whole accidental shape of this episode gave me such an vital sense of contact.  And as with the doctor, it held parts of me together.

Thank you both.

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.