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.

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.

"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.

A strange calm descends ...

The mind is a fascinating thing, is it not?  I've been trying to figure out how I've gone from feeling markedly inadequate to the most calm and in control for a long, long time indeed, a real sense of being grounded, centred -- pick your metaphor/cliche.

I notice almost month by month how my boys are growing up and getting on with their own interests and interactions with less intervention from me; we all needed to get to this point so badly.  Nevertheless, forf a couple of weeks my habitual 2 days to myself were unavailable, and I became very tired.  In fact, I slept a lot, even for me.  There were some ongoing health issues, the usual disrupted nights with kids, but I was remarkably unrefreshed by the extra rest.

Is it a gender thing, or is it specifically me, that my reaction to this was to beat myself up?  To find myself hopelessly unable to cope with the day-to-day world and normal wear and tear?  That's how I was by the time I took both boys to a birthday party in a play centre not long ago.  A play centre; i.e., a place where kids jostle, knock, wrestle and occasionally shove each other, but where the action is generally good-humoured.  I hit a low as I watched P gallop like a big puppy towards any group of kids he liked the look of; he's so open, so warm, it's so hard to see the older kids pause with unfriendly expressions and turn their backs.  But even worse was watching S turn red with rage at every friendly attempt to play -- a ball thrown in his direction, a bump on the bouncing castle, a hand to his arm or shoulder ... I felt that some part of me was going into overload.  After what felt like an eternity of boy-monitoring, I walked away and sat down. It was too much, watching this inexplicable fury at a birthday party.

As it happened, after food, all the kids' mood changed.  Things got calmer, and S got friendlier.  A welcome surprise.

The next day I finally woke up and felt awake.  It was the last day of the school holidays, and I was to spend most of it alone with the boys as Q was visiting his father.  I don't know why, but I sat P down and had a talk to him about his diet.  I found pictures of food with protein, and I brought out small quantities of things he could choose from.  He ran away, he howled, he blocked his ears, he sobbed.  I admit that by the end my calm was exhausted and I felt angry and resentful at my failure to get him to eat, but I went shopping later and brought back a few other options, this time with success.  Very small, but success nevertheless.

In a variety of ways since I woke up that morning, I have felt more in charge again.  I don't quite know what has shifted; whether it is the simple overcoming of exhaustion (including remembering to take my iron supplements!), or hitting the bottom of that parenting spiral where I had to walk away from my own helplessness, or whether the boys' behaviour has shifted again in some fundamental way that I have yet to identify, giving me more much-needed mental space.  Whatever it is, more please!

Pushing and shoving

The meeting with P's classroom teacher and the early years co-ordinator has come and gone.  Monitoring my own performance, I'd have to say I'm finally learning.  I did push my agenda yesterday, probably got too involved with my own thoughts at times, but at crucial points where I would normally feel uncomfortable about being "pushy", I didn't back down.  I don't think I've changed the face of the education lanscape, and with the benefit of hindsight realised I missed some opportunities to make more concrete demands, but I do believe I have made some fundamental alterations to their understanding of what P needs to be included and extended at school.  I was still strongly receiving the message that it mustn't be "extra" work for his sake, so that he is not stigmatised, but I feel fairly sure that this was their strategy for avoiding extra preparation on the teacher's part, as was the ever so nonchalant suggestion that feedback on some of what was discussed could be fitted into the school report (thus avoiding these apparently dreadfully onerous face-to-face meetings).

Q and I have had a crazy few days and so have not had a chance to debrief properly.  He did, however, tell me he thought I had "thrown" the co-ordinator.  Once upon a time I would have been disconcerted by the thought that my attempts to share information and work together had caused someone discomfort.  This time, I felt like that was a little independent confirmation that I had shifted the agenda a bit.  It is a big learning curve that the staff there are not really willing to embark upon, so I hope that my persistence has gotten through to them just a bit.

"Supporting" the AS child at school

Since P started school, I have battled my own anxieties about being insistent and making demands.  Nearing the end of the second year, I have come a long way, but I have certainly not mastered the art of advocacy.  A meeting is scheduled next week for which I am assiduously preparing, hoping not fumble yet another opportunity for supporting my son, by making those in charge of his education understand what he needs.

At the beginning of this year such a meeting was held, at my instigation. Everyone smiled at me. The new teacher seemed nervous; she had clearly never had an AS child before. She was handed a book by the teacher who co-ordinates the disability kids; no-one asked us if there were any materials we would regard as helpful.

There was lots more smiling, laughing, praise for my boy, how well he was doing. Whenever I tried to say, "that's great, so perhaps we could start extending him further", and gave an example of an area where he had difficulty, I was politely told by the person in charge, repeatedly, how many kids have that problem, how he doesn't stand out. This same woman talked to the new teacher about teaching him to recognise facial expressions. I tried to point out that he can do that fairly well; it's relating those expressions to internal states and other relevant connections that he needs help with. But she insisted on talking about him as if he were a little robot needing to be programmed with bunch of discreet emotional tags which he will somehow miraculously be able to employ just as his NT peers do. Actually, I don't think she thought that; I think she assumed that he, as any ASD kid, just has no hope of getting that far, so pictures of angry faces is about as far as it is worth going; more would be a waste of the teacher's time.

We got nothing that counts in that meeting. It took me back again to that first workshop, how revelatory it was to see my 2-year-old for the first time surrounded by little boys with short attention spans and emotional volatility. I can't blame them for not understanding; the teachers really need to have their eyes opened as I did that day. But since I can't drag them off to a group like that, they could at least have an attitude of professional curiosity. I am so tired of feeling like I am being tolerated. I know a lot, I have a lot to offer, I can and want to work with them for my son's betterment.

At a subsequent meeting, I thought I'd learned my lesson and was a lot more forward in specifying what I wanted for P. An arrangement that I regarded as ideal for regular informal communication between the teacher and myself was organised, with the blessing of an autism specialist from within the education system.  Once that overworked specialist was out of view, however, the school attempted to renege almost immediately.  I was told that it was unfair for a teacher to devote so much time and energy to one student.

If I've learnt anything, it's to turn down the emotional volume as much as I can when they pull this kind of stunt.  So instead of sleepless nights, tears, helplessness, I've tried hard to focus on what they are not getting, how I can make them understand, and how I can push myself to keep asking even after I've been told "no, something that I am very bad at.  This is not to say that I've banished all emotion; anger and frustration are particularly hard to keep at bay.  I did realise though that all my attempts to do things in a placating, submissive kind of way are failing.  At the next meeting, I will make sure that they know that I will keep asking extra support for my son, all the way through his time at their school.

Neurotypical missionaries?

Well, this is likely to be rambling and half-baked, especially as I am trying to compose it in between attending to S who is under the weather with a cold. But I have been trying to clarify for myself, for some time, exactly what I am doing for P, my AS son. Deborah Lupton describes, in The Emotional Self, "the observation and monitoring practices of the human sciences [which] construct the notion of the 'normal' self against which people are urged to measure themselves. If they are found to be deficient, individuals are encouraged to work towards achieving 'normailty'" (93). Alongside this, she notes that there is an increasing focus in contemporary western culture on "the confession of one's innermost feelings, dreams, and fantasies to other [as] a major part of the strategies of attaining self-knowledge, directed at the 'showing forth' of the 'authentic self'" (96). The focus on emotions and intimacy, and the professions that have built around these concepts, is enormous in the modern western world. And it's fine by me; I seem to have absorbed these lessons well and basically have no problem with them.

But they help me to begin to articulate a dilemma concerning my AS son's development. The notions of subjectivity that Lupton identifies, and the techniques designed for obtaining that kind of self-experience, seem almost antithetical to the way the AS people I've encountered function. Is my task to assist P towards this version of selfhood? Do I assume that he is capable of achieving, to a relatively limited degree, this kind of "self", and the more I can help him with the better for him? Or do I do it so that at least when he is older he will have some rudimentary tools for dealing with others who value emotions in this way? In some ways, I've painted a false dilemma because I've already had the tremendous good fortune of encountering the work of Stanley Greenspan, even before I knew that autism had any place in my life. And I am currently, with great excitement, making my way through The First Idea, the book he co-authored with Stuart Shanker. Their point is precisely that although autism has a biological basis, individuals can be guided through certain essential stages of emotional development even belatedly. In this view of autism, affective knowledge is not being foisted upon someone who is fundamentally at odds with this way of understanding the world; rather, access to this essential feature of functionality is opened up. Because it is not emotion for the sake simply of feeling; for Shanker and Greenspan, emotion is the key to symbolic thinking. I am finding this to be enormously fertile ground for navigating my way through the various "interventions", "therapies" and "supports" available to my son. And inevitably, it affects my thinking overall about who we all our, what notion of "self" we live with, how we believe ourselves to function. And I hope that I will be able to develop these ideas and have something a little more articulate to say down the track.

Belatedly, the scorecard

I have neglected to report on the outcome of all the professional assessments that we endured in the first half of the year. And so, the scorecard for S: does he have AS or not? We now have, on the no side, two pediatricians and one speech pathologist; on the almost certainly not, one OT, on the fence but leaning towards the not side, one psychologist and one psychiatrist. We continue to see the psychologist who, without the distraction of the AS question, more and more identifies patterns of behaviour related to anxiety.

What I take from all this is that he is odd enough to raise question marks from all these professionals (although least from the OT, SP, and the Pediatrician who specialises in autism, who tend to see him as "normal" but with some regulation issues), but no-one quite knows what to say. It's kind of fascinating in a way. For me, I feel a slight sense of relief that no-one is sending me away saying my child is fine, it's all my problem -- that doubt about my parenting, I presume that that's not just my own pathology, that most parents share it to some degree. Other people have now seen his blocking, antisocial behaviours and confirmed that they need some kind of attention.

Having undergone this ordeal of professional speculation, it feels, happily, almost to be part of the past. He has discovered what the concept of "friend" means. He is having some play sessions with children his own age, and generally they go very well.

When lamenting the months of waiting before an appointment was available with the pediatrician of our choice, the OT to my surprise was pleased at the delay, saying that with any luck he'd have a huge developmental leap in the meantime and all would be resolved for the best. She was pretty much on the money, but back then, there was no way I could wait calmly for nearly 9 months to pass before this could be verified. One of the earliest signs that the tide was turning came a couple of months ago, when S and I went to the museum together. It was the outing of my dreams. We conversed; he asked question and was thoughtful about my answers. We were really, truly together. There was a tinge of sadness to all of this though, as he was particularly interested in a some stuffed animals, and wanted to know if they were alive. So I explained that they had died and there were some people who knew how to take the skin from an animal and make it look like it was still living. From then on, it was "poor bird", "poor horse", "poor lizard". Finally, we entered the ocean gallery and found ourselves in front of the giant squid. Two years ago he'd seen for the first time the video of the scientists measuring and then cutting out some part of its anatomy, to this day I'm not sure what. At the time he stared with big eyes and then said to me, "hurt?" I said "no". I don't remember if I told him it was already dead -- I don't know what I could have said to a 2-year-old who was quietly but clearly having a crisis. We watched the same video yesterday, and then the animation of the squid hunted by the whale. "Poor squiddly" he murmurred, turned to me, and hugged me with his heart and soul.

It sounds too trite, both psychologically and aesthetically, but I think that his nascent confidence with friends let him drop his defiant barriers and share this basic, fearful pain with me. This acknowledgement of vulnerability flickers in and out of sight, but on the whole, life has been calmer and happier for the whole household, largely because S seems to have emerged into a new phase of his life.

teasing out understanding

Last December, I finally discovered a clinic that helps children with oral desensitisation. By a happy coincidence, we had just booked in to start sessions with a speech pathologist at the same place. Some discussion occurs, time goes by, funding options and qualifications cause a false start, but finally P was seen by an OT last week. I have barely been able to contain my excitement at the prospect of getting help with this. Looks like I'll have to hold it in a bit longer though. The session was disappointing in that the OT felt that he had "classic tactile defensiveness" and that we needed to start more generally rather than homing straight in on the food issues. Otherwise we wouldn't really overcome the levels of anxiety and avoidance that she feels are already present.

Well I said disappointing, but not unwelcome. This is why I try to keep him in contact with people who can help me see what might be missing for him, not just waiting for problems to manifest. So this is exactly the kind of information that I suspected that I would come across and needed to hear, it's just that the timing wasn't great, given how hard it is to live with a child who eats almost nothing, and a brother who therefore feels he can get away with a similar diet. It's pretty gut-wrenching, having your child's difficulties pointed out to you in detail. It has to happen, but there is always an emotional aftermath for me, every time I'm informed of a new detail in his profile of deficits.

In this mood, a few days later I watched another boy run enthusiastically up to P as he walked to class, place his hands on P's shoulders from behind and give him an affectionate shake. I didn't see P's complete reaction as he was a little behind me, but I think he basically shook the hands off, or at least shivered or physically withdrew somehow, perhaps briefly made eye contact and murmured something, then continued walking expressionlessly. The other boy looked surprised but took his hands away and fell in beside P.

I keep thinking about it. I think the other boy took the "rejection" well: he didn't get angry, or tease; he looked confused, but seemed to understand that his action was not eliciting the response he hoped for, and stopped; he didn't look as if he felt distressed, embarrassed at making a misjudgement, or anxious about the mis-match. On the whole he seemed to take it pretty well, although I can't know what he thinks of P as a result. Does he think that P still likes him? Does he think, "P doesn't like that kind of play, but we can do other things together?"

And what did it mean to P? He clearly registered the approach as unpleasant and made that clear. Did he understand that there was an emotional component in that approach too? I don't think so. Would another child have made a reassuring face as the other boy let go and walked next to him? Did P add this encounter to any other impressions of this boy, or did it just slip out of his mind as a random event? Such treacherous missed opportunities; how many similar episodes before a child gives up on him? So many things to learn, and how can it all be achieved? And is it asking too much for that to be the goal?

A few weeks ago I dreamt I was watching P recount an anecdote. He was confident and happy, and as a result many emotions flitted across his face with absolute ease, in synchrony with the events that he was describing. In my dreams I got to see the carefree, communicative child that I hope will develop as much as is possible. That would not only be gratifying for me, but a watershed for him.

from pillar to post

How many forms of turmoil can I take in a matter of weeks and still function? Since the "mini-assessment", with every day that went by, I became more sceptical, more relaxed, but keen to prepare S as best as possible and get the full assessment over with. That was until the psychologist cancelled about 90 minutes before the session; then I became considerably more agitated. This was compounded by her offhand acknowledgement that perhaps it was for the best, since she hadn't arranged for the paperwork that would allow us to get any kind of rebate for this assessment ... When she first brought that paperwork up 2 weeks ago, I asked her specifically to ring me if she had any difficulties so that I could make arrangements to see a pediatrician locally, & I also pointed out that I needed time to do this, so could she let me know as early as possible ...

So there was emotional suspension coupled with tedium and a dose of disappointment in the psych too. We were able to see a GP that afternoon to get a referral to the pediatrician who mercifully had a cancellation today. The GP did warn me that he couldn't guarantee that the pediatrician would agree to the assessment, so I then made calls & pulled together documents. So I sat last night, alone as Q is on an extended work trip, reading the point-by-point list of all the ways in which S resembles an ASD child. It was not good.

Then today we went to the pediatrician for what I thought was likely to be a rubber-stamping, with P in tow as well, home from school with a cold. I think partly from having him there, and partly because of the toy I told them they could have when we got home, we got pretty good cooperation from S. And so the pediatrician saw what I saw; that when he tried, S could do what was expected. Not only could he, but the Dr referred to the "richness" of responses, once he co-operated. But based on the history of angry behaviour that I'd given, the pediatrician announced that he thought that we were dealing with an attachment disorder and that we should see a pediatric psychiatrist.

Of course I was very business-like, but this was crushing. Finally, there it was; proof that I had in fact screwed my youngest child up. Attachment disorder. Luckily the babysitter I had organised for later that day (for S so that I could take P to an appointment) could come earlier. That meant that I could get away from my boys, I honestly felt, for their benefit, since I was so unfit. At least that didn't last too long. I took myself to a cafe for lunch & thought. And I soon came to the conclusion that I was not being dishonest, I was not dodging any bullets, but I didn't accept this theory. I know how stressed I was when I gave birth to that little boy with a newly diagnosed ASD toddler on my hands, but I also know that I mustered up my absolute best, and I know what he gave back. I know how much came from him, regardless of what we were offering. He has always been the same contradictory bundle of extreme clinginess and extreme independence. Some saint somewhere might have dealt with it better than me, but I didn't produce it, I know that.

And mingled in with this another huge wave of reservations. This is the pediatrician who diagnosed P originally. We did not go back for another session after that, partly due to his observations on P's "dependence" on me. He didn't like it. I foolishly mentioned that we co-slept, and he probably asked about breastfeeding (and I probably naively told him that P was an extended feeder, as I did of S when asked today). He felt it was therefore important to P to separate more from me, and gave us an ever-so-respectful dressing down about our co-sleeping. Any evidence of closeness seemed to suggest to him that I was holding my child back. We saw a specialist in ASD 2 days later and while waiting at the desk, I read his faxed referral, stating that the parents' concerns included "attachment". Well no, actually.

So in my distress it took a while for the reality to filter through that this man has some sort of attachment wheelbarrow to push. I really can't prove this, but I'm pretty sure that he saw my attachment parenting practices as something pathological. Once it hit home, I felt quite removed from the whole process. A few hours later, I managed an international phone call with Q who had listened to my earlier voice message and come to pretty much the same conclusion, bless him, not to please me, just his own gut instinct. We went back to this pediatrician today for convenience, and I can't say he's not doing his job as I think he basically got important things about both of these boys, but gee, you wouldn't want to ask him what you should do next.

Sentencing postponed

It felt like I was going to be sentenced; for guilt, for failing to understand what was in front of me. And a sentence for S too; a label, a life of problems that I thought he would not have to know as his brother does.

In that mood I drove to the psychologist's. S was at his worst. For the half hour of driving he repeated incessantly 2 "jokes", barely pausing for breath. I turned up the radio, I sang loudly, to stop myself from screaming at him. By the time I found a carpark we were late, and I was frazzled. S was at his worst, blocking the psych's every attempt to engage him, although she made modest progress. Pretty much everything she saw and everything I told her seemed to confirm the likelihood of AS, but the fact that he also seemed unrelaxed, combined with a conversation she'd had with the OT who feels he's probably not, meant that she couldn't be sure. And so she decided to do a full assessment in 2 weeks.

I had to do some shopping this afternoon and set out with the lowest of expectations of him, only to discover him to be enthusiastic, co-operative, and fun to be with. I feel like I am going around the twist.

"Stupid Pooheads!"

Why should this insult hurled at yours truly delight me so? P has been trying ever so hard for a few months now to get angry, as opposed to losing control. When things are really not going his way, he puts on quite a pantomime of pouting lips, crossed arms, hitting or even throwing things. Trouble is, he looks incredibly cute because he's really not very good at it; all the more reason to play my part, put on a stern, disapproving look, and let him go for it. And after my hand-wringing about the lack of connection I sometimes feel, these outbursts are characterised by his worried little eyes frequently meeting mine to see whether he's gone too far! I gave him a great deal of rope indeed; my instinct is that he needs to be able to do this if he is to have control of his emotional life.

Having brought to an end his pre-bed play session with S, his response was one of these performances. That in itself represented progress; generally, a play session cut short (as he felt this one to be) results in a melt-down; he is usually crushed by not having done everything he intended to do, no so much because of running out of time, but because of being distracted, and I think that that sense of disorganisation really upsets him. So yes, this was actually a good step forward for him. His brother's resistance was, unusually, weaker (just too tired I think), and so I focused on getting him to bed and warned the shouting gesticulating P to get into his or leave the room. He disappeared for a while, then stood in the doorway trying, I think, to look defiant with those searching, uncertain eyes. I told him to go where I couldn't see him (S and I were having a lovely cuddle), but instead he came in, uttered the aforementioned insult in an uncertain voice, and climbed into his bed. When S dropped off, I gave him a kiss and told him I loved him.

I had watched him "play" after school earlier with a boy he speaks about a lot, from a different class. I thought he'd made a mistake, that this kid did not in fact like him, as P trailed around behind the boy, who ran around making gun noises and looking at no-one in particular. To my amazement, on the way out, this boy asked his mother if P could come over for a play, and repeated the request to me. I don't know this child, but based on what I saw, as well as from what I've seen of P's other playmates, there seems to be a group a young boys with rudimentary social and play skills who are reinforcing each other's weaknesses rather than gaining skills from their more able peers. I don't mean to be completely negative about their play, but it does seem that the kids who are less able to connect spend time with other kids also lacking the ability; that might suit some, but others might flourish, I suspect, with some guidance. It may seem a long bow to draw, but showing me that he knows how to be angry, well, it is part of skilling up, of becoming more discerning about his lot, of being able to act on his emotions rather than being swamped by them -- isn't it?

Maternal contortions

I wonder how many other mothers have found themselves in bizarre bodily predicaments like those of my early days with P. I always fed him on demand, & had no qualms about feeding him to sleep; in fact, I keenly remember the hazy sense of relief that came with an afternoon feed when I had managed to grab myself some water first and a DVD to watch as he lay completely relaxed on the pillow on my lap. Nothing could alleviate the appalling lack of sleep, but my aching back relaxed, I didn't have to respond to anyone or anything, and I could be distracted for a while and allow my emotions some time off too. Really, that was about as good as it got for many, many months.

Despite being relaxed about feeding and sleeping arrangements, I had foolishly assumed, when I was pregnant, that there was still a place for a pram and a bassinet in our sleeping configurations; P would, surely, be happy to be lulled occasionally by singing, rocking, or rolling, wouldn't he? I mentioned in an earlier post the sinking sensation that I felt when he was less than 2 weeks old, as it registered with me that, basically, I was not in charge of any of these decisions. At night, we would lie him in the bed between us, to have him stir within minutes. We put the bassinet mattress on top of ours with a wedge under it so that he was not quite flat; no better. For not a few nights I "lay" propped on a pile of pillows while he slept on my chest. No matter where he started the night, when he roused, he didn't just whimper or resettle quickly; he got very, very upset, and the effort of calming him, which consisted mainly of frantic bouncing, usually with thumpy disco music in the background, was exhausting, and frankly, unrewarding. And during the day, if I didn't/couldn't feed him and have him sleep on my lap, or over my shoulder, I would carry him around in one of the array of carriers and wraps that I ended up with. The one that was most comfortable for me, he slept worst in; best for him caused my back to burn. I remember one day being determined to toughen up and put him in the pram and stick with it; I lasted a block and a half before carrying him home, defeated and totally demoralised.

So my daytime options were P sleeping on my lap (at my breast) or on my chest. Ads for baby carriers and wraps are full of halcyon images of babies sleeping contentedly while their mothers cooked, chopped vegetables and gardened with their charges held blissfully against the maternal body -- another failure for me to chalk up! Well, strictly speaking, no; he slept longer nestled against me than he slept anywhere else, but any activity on my part other than walking woke him up, as did his feet brushing against our thighs if, after all the stomping required to get him to sleep, we dared to sit down (so any sitting had to be done perched on the edge of a chair with legs akimbo), and if I propped myself on pillows and tried to rest (despite this working some nights), the precise angle where I was able to relax was the one where he woke up and wailed like an air-raid siren. It felt like my baby was an instrument controlled by a higher power in a calculated program of persecution.

At 7 weeks, we discovered hammocks, and were dreadfully excited as he lay in one, without complaint, and was bounced and patted to sleep without being fed or carried. That excitement was soon tempered by the realisation that he would not sleep more than one 30-40 minute cycle in the thing, and sometimes, we could bounce and pat him for longer than he slept for to get him down at all. It was still better than what we'd had, but the relief was minimal.

The months dragged on. At 11 weeks, when his eyesight kicked in, I abandoned lying him down in the pram and sat him up instead; so fascinated was he by the world he could see that we were now able to go for short, fast walks, if we avoided lulls in the motion (waiting for lights had me sweating from stress), prominent bumps in the footpath, which sent him ballistic, and direct sun in the eyes, which had the same effect. The baby carrier was always stowed underneath, and usually employed before we reached home. I could also now lie him down at home in the bassinet and wind up the mobile over his head, and this would keep him quiet as long as it was spinning. It lasted about 90 seconds, and I would frantically run from it to the toilet or the kitchen for food or whatever I needed to do in those short bursts, for as long as they lasted. One day these 90-second bursts lasted for 40 minutes. Another, he relaxed enough that his eyes closed for a few brief seconds before whatever it was that made it so hard for him to sleep forced them open again.

At 5 months old, I, sleep-deprived and alone all day in the heat of a dreadful summer in our un-airconditioned home, could not sustain any of this. The first time I took him out in the car specifically to make him sleep, I felt that I had fallen one ledge further down the Cliff of Failure. I sat in the air-conditioned car, listened to the radio, and worried about staying alert when I was so tired. He took ages to fall asleep, but it was without tears (on his part) or pain (on mine). Settling him in the evening became particularly horrendous at this time, and so sometimes, Q and I would both go on the drive and converse, an occurrence so rare that it felt decidedly strange. Sometimes we did 2 or 3 round trips of the entire freeway before P dropped off. I remember for New Year's Eve, we festively varied our route and drove by the river, even though the slower speed was not as conducive to sleep ...

By now, P was mobile enough that we felt that the hammock was no longer safe. We still clung to the notion that he would learn to lie on some kind of surface during the day and rest there. We had a cot, and now, we decided, was time to use it. For 3 weeks we persevered. The first few days, he seemed entertained by the novelty, and may even have fallen asleep by himself, I really can't remember now. If he did, it didn't last long; rebellion soon began. Not only were we tired by the effort of getting him to sleep; he didn't seem to be in anything like a regular sleep pattern, and also seemed to tire very easily, as he had since birth. We were monumentally confused and worn out.

Not knowing how to get him to sleep, when he needed sleep, or how much sleep he needed (since he never seemed really rested), I decided that I would make it as easy as I could for him to sleep, which meant feeding him to sleep every time. If I did that for a few weeks, we could at least figure out what his sleep pattern should be. He would also, we presumed, be more rested and so easier to deal with, which would help our energy and morale no end. Then we could work on how to get him to sleep. I'd run out of options, so this was the best plan I could come up with. At 6 months, I started lying down with him on the bed, and staying. Stupid as it sounds, I didn't know how to get my nipple out of his mouth, but it didn't really matter; after about 20 minutes, he started comfort sucking in his sleep. If my nipple had dropped out of his mouth while his jaws were loose, he woke up; with it in, he settled down for at least another sleep cycle.

So much for my plans. Once there, I couldn't escape. He was too heavy now for my sore back to carry him round. There was no-one here to help me, so I went down with him and stayed there. At least, you would think, I was getting some rest too, and I sort of was, but there is no way that I could actually sleep with a baby working on my nipple for much of the time. So I read. I don't know how I could think enough to read, but it was that or lie there in the dark despairing of how I'd gotten myself into this predicament. I read books about babies. I learnt an awful lot. But the ground beneath my self esteem was crumbling every day, and I slid by degrees further down that cliff face ...

I sought all sorts of help. We'd had a gentle-minded sleep consultant visit when he was very young, and had several sessions with another expert in the field. I read everything on sleep out there, and got as far as booking into one of the dreaded "sleep schools", although I never went through with it. I did have a phone consultation of sorts with the nurse though who thought I was actually doing a good job of recognising my baby's tired signs, and as it happens, I think so too. I think we had a pretty good repertoire of strategies up our sleeves as well. Working against us was our exhaustion; it's hard to change anything when you are in that state. But I do believe that at the core of it all was a baby struggling in ways that no-one appreciated. Post-diagnosis, much of this early time made a lot more sense to me, and I was so traumatised by that time that I had been over P's infancy with a fine-toothed comb, never understanding why it had left me so utterly crushed. With hindsight, I can say that at least we were always guided by trying to meet his needs, rather than trying to force him to be the baby that he wasn't, and really couldn't be. It was gruelling, and I have no doubt that it could have been done at less cost to ourselves, if only we'd know what we were in for ...

But what happened happened. At around 1 year old, we started to stretch out P's night-time sleep intervals, as he rarely slept more than 2 hours, often less, depending on which part of the night it was. Over several months, we got him to sleep for 5 hours. That was our goal, but once there, I had to make it 6. From there, he went quickly to 8, and by about 16 months weaned himself from night feeds. The day situation continued. At night, Q held P if he cried for the breast, but there was no-one in the day to do that, so there was no change, until I got pregnant with S, when P was 19 months old. Four weeks into the pregnancy, for unknown reasons, P started damaging my nipples. One night, Q popped 5 blisters, and they were just the big ones. I presume that my supply diminished, or the taste changed, and so he reacted by kind of worrying my nipples; whatever the reason, we had to change things quickly. Q stayed home a few days, and his distress was horrendous. P pretty much continued to cry at every sleep for months and months and months ... I felt like a heel, but I guess I had just enough of a shred of self-respect left to draw the line at suffering physical damage like that (hmm, I didn't adhere to that too well next time round! But that's another story, and the circumstances were different too).

Oh, I've made it sound so dreadful, and so it was. But in some ways, only because the stakes were so high. Feeding P to sleep, I could see that he was in the best place in the whole world; anybody who has watched the phases that a baby goes through as it relaxes at the breast must have seen this too, but how much more intense it is for the mother who is physically connected to the child. This is not just about sleeping; whenever I see a baby being fed from a bottle, gazing at the mother's face, and sometimes reaching out, I just wish the woman knew how euphoric it would be for her if she could complete the physical connection. So the sadness at taking the best place in the world away from my child was just huge. Perhaps it wouldn't have been so if he had seemed a more robust little individual, but it felt to us as though everything came at a huge emotional cost for him, and so, for us. The serenity that came with being fed to sleep and lying by my side while he slept ... I'm not sure how else we could have provided that for him, with the resources we had.