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?