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?

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.

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!

Same person, different lives

I wrote this a few weeks ago.
I am half-way through what is, for me, a most extraordinary adventure. A return to the life I inhabited before having children, which has been all but scoured from my daily existence for nearly 7 years. And so I am away without them, for the first time, EVER, for a good week, presenting papers at not one but 2 conferences. The tumult of emotions that have accompanied this venture have drained me utterly. I can see my reflection in the screen of this netbook and I look so very tired and older than I thought. For me there is so little solid ground involved in this expedition: I have left the family that commands almost every unit of my time, energy, attention, affection, to place myself under the scrutiny of would-be colleagues, I suppose I could call them. I rose to the challenge of this because of a strong interest in the topic of one of the conferences, and added the other (which has just finished) because I felt that it would be good to make the most of the opportunity. But I am relying on old research rewritten with a new emphasis; nothing wrong with that in some ways, it’s just that I have so little sense of validity in my return to this fold. I have no formal affiliation, a minimal track record for my age, I am not paid in any respect (and I believe this matters), and because of my family circumstances, little of this is about to change.
Well, the response to the paper that I just presented I think was positive, but it’s not entirely clear. It consisted of a lot of intensely communicated advice from senior people in my field whose work I respect very much; what I extrapolate is that their attention demonstrated a worthiness in my work of their consideration, but the many helpful suggestions also suggested that they felt I needed in some sense to pull my socks up. It might not be quite that bad; after all, one of these people asked me to send a copy of the paper to him, another then asked if I’d do the same ... and I have had a slightly unrelated coup, in that in the days before I left, I had a piece accepted for publication by a journal which I am proud to be included in. This article I have been working on in dribs & drabs during the years at home with babies, to the point where sometimes I felt that I cut a figure of total ludicrousness. For instance, when S attended occasional care the year before last, I was physically and emotionally exhausted. I knew that leaving him there would rouse his anxiety and cause me more stress than it was worth. The saintly woman who ran the show, after years of working with stressed bubs of working mothers in long day care, was totally sympathetic to my admission that what I really wanted was just to have some mental space where I was not subjected to his voracious need for attention, and that I would rather stay quietly in his sight while he got used to being around other people in a new place. And so I spent many a morning perched in a patch of sun on the side of the sandpit working on precisely this article. And now it has crossed that seemingly impermeable divide between my chaotic personal life to the public domain – at least, it’s on its way.
But amid the emotions of wondering what I want from this trip and my battle with the anxiety with the legitimacy of being here, I found myself in an aeroplane with a crying baby a few rows away. It took me back to trips with my own, of course. Later, I made eye contact with this child after she’d cheered up. She mirrored every face, hand and voice gesture I made. That was enough to bring on the tears. I still, still, still feel anguish about this. Even though S now more or less officially does not have an asd (much has happened in the last few months and I will provide an update), he, almsot as much as his brother, has not had such a relationship with me in many ways.

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.

Two confessions

Here are a couple of things that must sound dreadful. My day started with me just flattened by the emotions stirred up during S's "mini-assessment" yesterday. I became more convinced that the psych's suspicions were right, that I had just been interpreting things with an inadequate framework for understanding AS. I was sobbing before I was out of bed. I felt incredibly bleak. I had to start adjusting to the new reality taking shape before me.

S didn't want to go to kinder as usual, and P was fighting going to school. I had nothing in the tank; I told them there would be a new toy if they went. Immediate change of attitude; S even went and got himself something for "show and tell" (no-one has discussed this with him, he must be copying his brother's routine from school last year). He apparently had a terrific day, played really well with a new boy, and when I arrived he was happily playing with a girl he knows quite well, even if he was telling her she was dead for not following some crucial instruction (so he was mimicking a computer game like P does). He told me he'd played with everybody. He seemed relaxed, happy. I should have been happy, and I was really, but here is the dreadful-sounding part; I almost would have found it easier if he'd been the unhappy, mal-adjusted child that I'd braced myself for. At school pick-up, I found myself with another lovely son. We had to bring home a friend of his whose father couldn't get there on time. All 3 boys were happy and well-behaved together.

I do not know what to think or feel. On top of this, Q has had to go to a work function tonight, and I always pace myself carefully on such evenings. The boys had a lot of computer time, a lot of leeway to play, were up a bit later so that they'd be just that much more tired when I tried to get them to bed. The next dreadful-sounding bit; sometimes I feel almost too nervous to do things with them. They are so unpredictable, I get confused, I get drained, I get frustrated, I get angry. I don't know what to expect, and sometimes I just hold back and try to make it to the end. On nights when it's just me like this, I wonder how single parents cope, I wonder if I make more sense to them, or if maybe I'm not as alone as I feel.

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.