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.

"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.