One of a club!

My attempts to advocate for Primo at his school have reached a pitch impossible to sustain.  I have made some great gains, but they have been imposed on the school by external pressure rather than achieved co-operatively.

There has, accordingly been a backlash.  And in the nature of furtive wars that are fought through coded actions just inside the bounds of the acceptable, I've been pelted with intangible, indefinable retributions.

Well, I have cracked.  Or maybe the existing cracks just got bigger.

In an attempt to drag myself back into an upright position, I've tried today to talk to people who understand. How I salute the women who work in positions of support and advocacy who listen, and who tell you important things.  What I always want is to know whether I have gone so far out on a limb that I really have turned into the gibbering crazywoman, that the school reflects back at me.

Today I found out just how mundane my woes are in the world of disability support. Thank you to the woman who let me know how much I have in common with so many other families, how many people despair at not being believed, how some resort to recording those awful scenes where their child falls apart to "prove" to their child's educators that they are not flagrant liars.  Last week, when Primo melted down with an intensity we have not seen since before he started school, I thought bitterly about how the teachers who claim he's fine (and I'm an idiot) wouldn't even believe me if I told them about it. How much further down that road some people have been pushed.

So guess what; I'm not alone!  I'm one of many parents who are greeted with out and out disbelief when I explain how my child's needs are not being met.  I am experiencing utterly predictable misery caused by run-of-the-mill provocations! Hip hip hooray!

Briefly: cuddles and Cuddles

Primo has always been physically affectionate, but his parents know that the quality of what he offers differs, in ways that we cannot always articulate, from what most people call "cuddles"; perhaps they feel more needy than "affectionate", perhaps they lack a sense of reciprocity. Recently, couple of times, I have been interacting with him and he has cheerfully thrown his arms round my neck spontaneously.  I have responded by gently placing my arms around his waist.  He has looked at me, briefly, and I detect in his eyes slight surprise and also pleasure.  I hold the pose for a few seconds, probably not even that, and force myself to let go before it becomes problematic.  To me, these two instances have seemed to be real, reciprocal acts of affection.

I can't be certain if I'm right, and I can explain to very few people why the distinction matters.  But it does matter enormously. I've been delving into the work of Stanley Greenspan again, renewing my knowledge of his theory about the inability of infants with ASD to connect emotions, intentions and motor functions, and how possible it is that much of what is considered to be "autism" is in fact the child as rudderless ship, having sailed off course, but not fundamentally, irretrievably lost; some can be guided back.  If this new Cuddle is a more integrated physical and emotional expression on my son's part, it's a very, very important capacity that he has developed.

Oh, and did I mention that for me, it was sublime!

some good things

Primo has started chatting to me when I pick him up from school, and at other times he seeks me out to share -- not just the special interests, but events from his day, his thoughts about them.  It's hard to explain, but there is a new kind of connection to his world, and to me, which I hope he is also experiencing with other people in his life.  It's wonderful!

Secundo is managing not to attack his brother every time he is upset; he has come up to me several times lately to talk about what happened, sobbing, still blaming, but making that crucial transition from acting on impulse to putting his emotions into symbolic form.  We have a long way to go, but it's a promising breakthrough.

I'm glad to have something positive to share!

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.

Despondent

Occasionally I think things are getting better, but then I have the even worse sense that I have been kidding myself.  Secundo had an OT session today, the first since I sent out an SOS email to his psychologist and OT pleading for something more effective than 1-2-3 Magic, which we've been doing it for years, and has been at times very painful emotionally, and still involves a lot of hands-on disruption to the entire household to get him to stay removed until he is calm.  And in the meantime, all family members have been subject to far too much physical and verbal abuse. And yet, some hours, some days, his behaviour is delightful.

The OT session in the morning was awful.  He wanted to play "murdering" games; most of his games are about violence.  He is becoming more articulate about that which is probably a good thing in the long run.  But as she usually does, the OT challenged him about various aspects of his play until he was threatening her, throwing things, and eventually hurt himself with a toy he was brandishing, collapsing in sobs into a ball on the floor.  I wondered if these sessions really were the right thing to do.  But to do nothing seems a guarantee for more friction and distress.  I set up a play in the afternoon for him with a friend at the other boy's house.  The boys clearly adore each other, the mother seems comfortable or is very good at disguising any misgivings she has, but the step-father, not for the first time, made comments at pick-up overlaid with disapproval.  And I am probably far too sensitive, but I take it very hard, picking up my child and feeling that he has been unwelcome at any level.  So much effort goes into helping him to negotiate other people, but our efforts feel pretty worthless at times.  As I said, perhaps I'm too sensitive.

Primo spent a while in the car with me and at times we chatted.  That is always manna from heaven.  The conversations inevitably evolve into the world of computer games, and even then, they don't make much sense in ways that I expect conversations to make sense.  And so the foggy, frustrated, bored, guilty, anguished build-up in me.  I'm hoping for another familiar feeling that often comes after these low points, when something changes quite suddenly (at least with Primo), and he shows skills and awareness that only weeks before, it was hard to ever imagine him possessing.  I'm really hoping that this is the pattern, that a wave is going to come and pick me out of this trough.

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.