Shared attention

Anyone with an AS child knows that this capacity is severely limited in their offspring.  It's a cause for great celebration whenever a breakthrough is made.  I'm used to working on this with Primo, but as always I'm rather more confused when it comes to Secundo.  Rather than a diminished capacity, S has always seemed to not have room for another perspective alongside his own; he's been so consumed with the need to be in control that whenever we actually do something "together" like read a book, I feel more like a tool in the process.  The alternative is that "together" feels like a competition; if I try to model something or draw attention to something, I get that the same thing back; OK Mum, you've told me about the penguins, now I'm going to tell you about the penguins ... There is no relationship in that.

But now, a few weeks into the new school year, my youngest son is hungry to sit down with me and look at books or TV shows together, in the traditional meaning of the word.  He smiles, makes eye contact, shares the moment, the experience.  I don't get the impression that it's something he's just learnt, I feel like it's suddenly become safe, like he's been experiencing it or watching it happen at school, and he's put his mind to extending it to home, with Mum, with whom it is presumably particularly pleasurable (Mum as ally rather than sparring partner).  It's as sweet as honey.  It also makes me self-pitying -- the years without this fundamental, this cornerstone of human relationships.  I could just never get it to happen.  Now it's there and I don't know why.  If only I did, perhaps I could have unlocked it a long time ago.

That said, just a little afterword -- with every success, every step forward a child makes, a mother has to adjust to the incremental loss of dependence, even if it has been a tempestuous, draining dependence.  So this new phase for Secundo, and Primo in his new class so far happy and settled, meant that I was finally starting to settle in to my own headspace a bit this morning, really able to concentrate, but as time went on I was aware of something flitting past the corners of my consciousness, and then it was a bright flash like that meteorite over Russia the other day: I miss my little boys!  They are away all day and I'd so love to see how these happy little creatures are living their lives.  I think I'm allowed to feel that aren't I?

This is how you teach an AS child

The boys have been badgering me all morning for X-box time, and I finally give it to them.  But we have the console timer set to 15 minutes, which expires when I am in the shower.  Primo charges into the bathroom with a controller to get me to add more time.  All that heightened emotion, perfect opportunity, I think to myself, to set up what they often call a playful obstacle.  So I just keep showering while he jiggles excitedly and fails to actually look at me or ask for anything.  Eventually he realises nothing's happening and makes eye contact, extending the controller towards me, standing in a stream of water.  I make a big face and spread my arms, hoping to convey the message, "how do you expect me to do that right now?"  A look of understanding comes across his face.  He disappears till the shower is off.  Then he comes back, shuffling towards me making "funny" noises and pushing his face into my chest.  Again I don't react, making him look at my face for information.  He does so, and I shake my head and make a gentle kind-of disapproving expression -- this is not how you ask for something.  Admittedly with a silly voice, he then asked me to give him more time.  I did so.

I'm satisfied that in those 2 exchanges I was able to get him to take in more of his context, I gave him an opportunity to remember and practice where to look for important information (the face), I gave him some manageable expressions and gestures to communicate important information about myself, I believe that he learnt something about waiting ...  I could pull it apart more, but this is the stuff I care about, this is the stuff that will allow him to function in the world.  Is it so hard to understand?

Lessons in Power and Control

I wanted to write about a wonderful first; taking Primo to his exercise class, arriving early, and having him initiate a conversation with me instead of reaching grumpily and somewhat desperately for my phone.  Having that experience repeat the following week, having him ask real questions, like what is his Dad's job (ie not just what he is called by what does he actually do!).  In some ways it's a familiar experience; there have been many things I couldn't imagine him ever doing that I have yearned for and grieved over.  And then they happen.

I think of the delicate dance we do to get to such points -- clearly, my own understanding of this dance is quite partial, as I cannot predict or control the outcomes.  But I do know the basic steps and the direction in which we should be heading, so I try patiently to find a rhythm that works and keep us moving together.  There are many rewards, and many concerns; overall, though, his parents are optimistic as we do see change.  There are some truly intractable areas that we make little progress with, such as his relationship with food.  But we know we've done the right things, offered the best kinds of support and well-planned opportunities for growth and change.  We never stop trying.

That's what happens when I'm in control.  My son, my responsibility, my job.  I get on with, I find resources, I check and measure my ideas and assumptions by consulting and working with professionals whose approach I respect, as well as by continuing to educate myself through attending workshops, and by reading.  But then, there is this fact in his, and his family's life, known as The School.

The School has made it clear that teaching ASD students is the same as teaching any other student.  You be aware of their quirks, their anxieties, but by default you change nothing.  Then they get a parent like me who calls upon their obligation to meet with me and go over their plans regarding his education  -- that's what the Department's guidelines recommends.  Then I sit in a room with them like a harried madwoman brandishing photocopies of diagrams, a proselytising crackpot desperately waving my finger across the page trying to draw everyone's attention to the things they are not seeing.  And seeing in the backs of their eyes the frustration and resentment -- why are we here?  When will she stop trying to tell us how to do our jobs? --for the most part they are polite, but I'm so clearly to them an over-anxious mother who doesn't know when to leave off, whom they resent for wasting so much of their time (and disrupting their schedules) and questioning their expertise, as they see it.  I didn't dare pull the government-funded DVD out of my bag, the one that showed teachers from another state assuring the viewer that the kind of support I am talking about did not involve changing the curriculum, just some extra observation and thinking.  And I left with the full knowledge that these people have no respect for me, just a set of obligations to give me a chunk of time in a room with them which they must endure as best they can with their best veneer of cooperation and concern pasted over the top (or she might complain ...).

I find my mind constantly drifting to the old cliche of women being told to "take a Bex and lie down" -- I guess because I think they'd like to respond me like that, if they were allowed.  My sons' school is run by women.  Women marginalising women.  Working women marginalising "unqualified" mothers.  Not just the women, there are plenty of engaged fathers too.  But the children are young, the mothers tend to be the frontline still.  I guess it's at least removes a distraction, taking gender difference out of the picture and seeing that women in power are certainly capable of patronising and disempowering other women.

If I had a dollar for the number of times I've been told my son's teachers have been chosen because they are the most "experienced".  In many other contexts, they would have to justify what that means, but in this one, that's where the conversation begins and ends, with a word that's overburdened and abused to shut down discussion and deprive me of options, basically to stop me from making my contributions felt in their teaching; that, after all, is my entire goal, and their wholehearted mission is to prevent it.  It really is all about power. There is never any reference in these meetings to my son's actual wellbeing -- they would say, I suppose, that that is implicit in everything they say (because they are so experienced, they don't need to reassess whether they could be meeting a child's need better), but all I see are missed, wasted opportunities, that would not be hard for a teacher to take up, and it makes me frantic.

To be fair to them, they are clearly perplexed; why does she keep knocking at the door?  We are so experienced, we are so capable, we know what good teaching is!  Her son is fine, he knows how to ask for help, he contributes to discussions, he has good relationships with other kids.  But given all that, they don't ever ask themselves, so what is she talking about?  It would be quite entertaining, I imagine, to look at a transcript of the meeting and analyse the rhetorical strategies.  I've spent too long with people who like listening to new ideas.  I've been trying to come up to speed with that fact for 3 years, now that I have to deal with people who are not like that but who have all the power.  I'm failing badly.  I can't help feeling angry, but part of me knows I just have to give up now.  Which leaves guilt, guilt, guilt, because if I can't get the best circumstances for Primo to develop, well, need I say more?

Empathy

I read a good article addressing speculation about the Sandy Hook killer having an ASD which linked to this blog which I've only had time to skim, but looks well informed, feisty, and the key ingredient, from the heart (you've got to have the latter to give the former any point as far as I'm concerned).  But from quick read-through I've done, one sentence stood out for its poignance and insight (and I've quoted the previous sentence to give it some context):

But whatever deficits autism might carry in terms of recognition [of empathy], it makes up for in terms of the shared feeling. My experience has been that once an autistic becomes aware of the other person's emotion, the feeling comes without a social construct, naked and in full, unmodulated.

Thank you so much for that Emily. I should probably hang on to this little draft and refine the many thoughts that this observation generates for me, but patience is not my strong suit and I just want to get it out there for others to mull over as well.  To be continued ...

Big Improvements!

In a matter of weeks, Secundo has dropped a great deal of attitude.  Whatever has brought it about, the boys are now often playing like children usually play; there is co-operation, consideration, there are imaginative scenarios, and there is a new aura of contentedness adorning this household.  Good heavens, I hardly know what to say about it!  I certainly know what to do with it; I'm always amazed at how quickly one forgets the bad as soon as one is rid of it, even on a temporary basis, be it chronic pain, emotional distress, all sorts of things.  For a few days I've been feeling like a different person.

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.