Pre-Christmas flat spots

I've been a bit short of inspiration lately. There is a lot of busy-ness at this time of year. I have been on the usual roller-coaster with my kids. A week ago I was fretting that we couldn't get S in to the pediatrician of our choice for 9 months; today I forgot even to make the appointment for the referral. I keep going backwards and forwards as to whether he is basically Ok but just on the hard work side of things, or whether something else is going on. I had some advice a few days ago from someone who does not know him very well, fairly generic advice about going to back behaviour-managing basics. When I sought this advice, I had reached the point where I was hardly interacting with S in the day; it seemed that I would be rewarding so much undesirable behaviour that there was nothing left to say or do together. I felt that I had reached a point of breakdown, and thus of failure. But I was consoled to hear that maybe that was exactly what needed to happen, and that it might indeed take a little while, but that he would in fact learn from my refusal to engage or respond to a great raft of troublesome behaviours. That's where I lost sight of what I was doing, I think; that if I refuse to respond for long enough, he does have the option of modifying his behaviour to get my attention. It feels a bit harsh, but I have to have faith that if he is basically doing OK, he is capable of going through this process. Meanwhile, we continue to try to organise support for P in and out of school; friends, therapies, teachers, reading, bills, worry ...

I knew I needed some kind of advice with Christmas coming up; always so much stress, although I have managed to carve out some nuclear-family time which is fun, and the boys are now old enough to look forward to seeing their extended family later in the day; it used to all just be strange, disconcerting, and tiring for them, and somehow we were always just expected to drag them to events when they would usually be napping, where people ate late & sat around a table for lengthy periods, & manage to relax & have a good time. Over the years the members of the extended families have had their own trials and are now less prescriptive about the whole business (as opposed to my side where no-one makes any effort to see anyone), but really, my idea of a fun Christmas is just to have the day with children & partner. The rest I do as well as I can because I know my boys need as much sense of a family as they can be provided with, & that is no mean feat given the materials at hand.

Mea Culpa

Sometimes I am clearly the problem.

I can rant, complain and scratch my head all I want at the mysteries of my children, but my own contribution to their difficulties can sometimes be writ painfully large. Since my last post, life with S has not been smooth. All the usual problems have worn down my patience. Last week we had a dreadful day where I could barely disguise my ardent desire to simply escape from him. I'm not proud of it; I'm sick about it, but all the same, that's where we ended up. It wasn't hard to tell that he was crushed. When he was finally asleep, I was consumed with anguish. I made some resolutions, and some phone calls, and have bent over backwards since to restore some trust and affection. But even in a few days, I've slipped backwards bit by bit as I try to weather wave after wave of negative behaviour; incredibly silly clowning, aggressive play, antagonising brother, engaging in interminable nonsensical conversations, including topics such as what he would like to eat. Today was another try-hard day on my part, but I guess I am pretty tense; when he spilled a milk drink on himself and the carpet this morning (after being told not to muck around with it) I got angry. His response was immediate, heartfelt distress; it was clearly from the pain inflicted by my anger, cutting him to the core. It was terrible to hear. We cleaned up and fixed him up. We played most of the morning, not without some conflict; we must make an effort to clean up our toys, for instance, but instead of digging in, he did eventually help to pack up. So we were on a better, more co-operative footing. It is hard, sometimes, to feel good about the job that I'm doing.

The Verbal Headgrab

This was Q's term for what I described to him earlier in the week. Taking S out in the stroller, he started to talk -- and talk -- and talk. It was not a conversation; it was a monologue. It was filled with details of toys, TV shows, names of friends of P. It was garbled, incomprehensible. It seemed designed to make sure that he was holding my attention. It was crafted in such a way that he was completely in charge of the subject matter and the delivery; there was no way to interject or redirect. At one point, I stopped pushing and refused to go on if he brought up certain topics. I am becoming increasingly negative and shrill in my attempts to have a satisfying interaction with him. I suggested talking about things we could see; flowers was the first subject. We had a few reversions where I had to remind him about the limits I'd set. But the "conversation" did not go particularly well.

We finished at school, arriving a little early to pick up P. Another mother sat with us to talk, commented that I looked tired, & I told her a bit about what had been going on. S talked louder and louder and eventually grabbed my face and held his about 2 inches from mine; the face-grab, not an unusual tactic from him. But as Q remarked when I repeated all this to him that night, the previous monologue had much of the same quality about it. We aren't just "together"; he must ensure that I attend to him incessantly, or so it feels.

I must sound so petty and demanding. I feel like I am. We had a bad time at art class today too, where he refused to let the teacher's most gentle suggestions through. At one point she suggested he draw a particular shape on his project; when he did, we both went to praise him, of course, only to have him insist that it was actually something else. That's not the first time this week that we've arrived at something like what I would describe as a reciprocal moment, only to have him back immediately and defiantly away from it.

We definitely have turned the corner I mentioned recently, when it comes to emotional regulation; but this need to be in control, it's bad for him and it's bad for me. While I try to find some assistance for him, I do need to have a hard look at myself. My temper is so short and frayed. These episodes get under my skin so much. In the bigger picture, I feel, as I think I have indicated in different ways in different posts, starved of reciprocity. This hurts. It was a feature I think of my own childhood; perhaps I'd be doomed to yearn for it even if I had the most effusive, empathetic child. Nevertheless, I do believe that both boys are particularly effective at pressing that button.

But how did the button get there? My own father was a pretty cold, unaffectionate figure. My parents separated when I was 12 and I was relieved. He showed no capacity for empathy at all, and had some pretty nasty personality traits. Since P's diagnosis, I have naturally gone over much of this and wondered if he is on the spectrum too. There are many, many characteristics that suggest that he would be. But since there is even clearer evidence on Q's side of the family, I wonder if I am getting carried away with playing amateur psychologist, especially since this year, I have started to wonder about my mother too. I immediately discounted her as a possibility for ASD because she has always been very emotional, and in her own way, very caring. But it has taken me till this year to realise that all that emotion is usually a reaction to other people, and an unhappy one at that. If you tell her that something is not quite right (say one of the boys has gastro or a nasty cold), she will fret; she's just bothered by knowing about it, it sort of panics her when something is amiss, or irritates her that the knowledge is in her head. Her "caring" tends to consist of endless worrying, and all she wants to hear is that this or that problem is over, not how it is resolved or how it affects anyone else. But she absolutely lacks insight into the people about whom she "cares"; never asks what anyone is doing, how anyone is feeling, and cuts all attempts to converse short. To this day, I know that I rush when trying to tell people things, I am so used to feeling as though I will not make it to the end. Probably why I like writing so much; the ability to follow a thought process wherever it may take me ... These are but my most recent ponderings after years of frustration and confusion. I think that most people would acknowledge that there is something no "quite right" about my mother (certainly my father is acknowledged to be eccentric, as it is euphemistically thought of), but perhaps many assumed, as I did for a long time, that my mother's behaviour is not surprising after marrying very young to an abusive husband. And yet, Tony Attwood writes that it is not unusual for AS women to find themselves in such situations.

"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?

Reciprocity

It's key, isn't it, to happy human relations? Unless you are on the autism spectrum? What if you are neurotypical, but some of your loved ones are not?

This situation is becoming more recognised amongst adults in relationships, but I don't hear much about the frustration of being the mother of someone who makes me work very, very hard in so many ways. I could burst with excitement for all the things I would like to ask P when I pick him up from school, or at any other time really. Because S has added such a layer of disruption to communications, I almost forget sometimes that things can actually get worse, not better, when I do have the opportunity to try to converse with P. I am met with a lot of silence. Sometimes I assume he doesn't understand my question; sometimes perhaps he just doesn't see the point of giving me an answer. Sometimes I struggle so hard to interpret what he does say that I am quickly worn out, and of course the longer I spend trying to untangle an interaction, the more likely he is to disengage ...

Since I am confessing to no-one in particular here, let me be honest; sometimes I get resentful. I just want a crumb of reciprocity, no not one crumb, I want much, much more than that. Yesterday I was very brusque with him. I was weary of the vagaries of our interactions, the need to repeat myself, to ask him to repeat himself, the wandering off before a conversation or a task is finished, the lapsing into silliness, all without the restorative little moments of sharing that I imagine other mothers have with their children, which in fact I sometimes have with other people's children, when I am left stunned at how straightforward and satisfying it has been to ask something, be looked in the eye, and receive a direct, relevant response.

Sometimes when I listen to the children's readers in P's class, a child will look at my face to see if they have got a word right. It is a startling experience. It fills me with sadness. I know my children love, want and need me, but I yearn for that simple expression of our connection. Having said that, I am reminded of a case where P does exactly that; a few times this year, someone has done something designed to amuse him. He has not quite known what to make of these occasions, and has sought out my face repeatedly. Sometimes I have kicked myself for not being quite ready for it, as it generally takes me by surprise; if I don't give him what he's looking for, he might stop trying to find it ... Having got some of my dissatisfaction out of the way in this post, it must be said that I am optimistic that we can build on such flickers of reciprocity. The work can, however, sometimes feel unrewarding.

Turning a corner?

I remember this feeling from when P was around 4 and a half. A few small mercies began to creep into the daily regime: a trigger for a meltdown did not in fact trigger the meltdown; a common source of friction failed to produce the friction. Amid this suppression of hostilities, I found myself slightly less besieged and a little more able to pause, calmly, and survey the landscape. But I most certainly remained on alert, for months, unable to discern whether this was an aberration or the shape of things to come. Eventually, I was able to relax into the latter; my fragile little wailer became a placid, comparatively well-regulated boy.

And so it has happened again. For a month or 2, situations which would not long ago have triggered huge tantrums have not only taken a different turn; they have often resulted in apologies and concern from S. No longer does he seem so distracted by doing the contrary of what he is asked; he is much, much more of a partner in our days. And so I find myself, with joy and relief, doing little things with him! Like just now, having a tub of fruit yoghurt in the fridge, I invited him to help me puree it, pour it into moulds, and freeze it for a treat later today. Only one refusal to cooperate in the whole exercise, and it was over when it was over, no subsequent screams, hits, nothing.

I have also noticed that S's counting abilities have just taken a big leap. We always used to watch the developmental leaps with P, encouraged to think along these lines by The Wonder Weeks. Even with ASD, he seemed to follow the timetable laid out in that book, but his development has continued to lurch quite dramatically, long after the first year covered by that book. At any rate, I think perhaps that our little guy, having pushed us through much frustration not so long ago, might have come out of the other side of one of these surges.

It is so exciting to have a companion! I can't quite banish the sadness at thinking of how much of the early years have been taken up with just putting out fires, just keeping both boys from falling off some kind of developmental ledge, instead of doing fun stuff with them! Another familiar feeling is that of letting myself of the hook a little; every time life improves like this, I see with a new kind of clarity what I have been up against. Whatever the lacks and blind spots in my parenting abilities, I really haven't brought all of the struggles on myself! In a better universe, perhaps a calm, rested parent might have dealt more effectively with S's raging temper and his fraught need to control his environment! But now, having lumbered through that period with the rough tools at my disposal, it might, dare I hope, be behind us!

Bodily betrayals

I have mentioned my chronic pain problems, due to numerous mishaps in my teens; they are debilitating not only physically, but are also crushing to one's self-esteem. Because I had headaches more days than not from when I was 16 into my early 20s, and because although those headaches abated somewhat with physiotherapy from that time on, BUT also because some of those headaches came with ear pain, which is a classic symptom of a TMJ injury (which I had), I attributed all headaches to the same cause. So I felt very slow off the mark indeed when, at around 31 years of age, it dawned on me that some of these headaches came at the same time every month. From that realisation, I was also able to identify the differences between the headaches I got from my injuries, and those from my hormones.

Which multiplied my sources of inadequacy; if I wasn't failing to manage a normal day's activities because of muscle spasms, then I was failing to manage a normal day's activities due to my body's own natural rhythms. Which is how I am today, having rung Q in a panic yesterday lunchtime as I felt like I'd just been hit across the head with a block of wood, having been taken by surprise by a very short cycle (the next joy on the horizon -- menopausal, perhaps? With such young kids? What a poster girl I am, in my bleaker moments, for all that is wrong with the older mother). Luckily he was able to come home fairly quickly and take S out while I slept for 2 hours. Despite the sleep, I went to bed at 8 that night, but my night was interrupted repeatedly by the throbbing pain in my head; I'd felt too nauseous to take painkillers before bed. I took some this morning and managed a couple of hours reasonably well, but late morning, I found myself looking in panic around the chaos of my house and my youngest son having a snack in front of the TV, wondering how I am going to manage to do the most basic of tasks, things which everyone around me seems to be on top of ...?

And yet, here I am able to put my thoughts into words & broadcast them willy nilly. Actually, this is a therapeutic experiment. I wondered if I could at least release the emotions, maybe I would regain some functionality. And it's a bit like the servant who whispered to the stream that the king had donkey's ears -- what was that story? -- this, I suppose, is my stream, ironically safer than hers, because I forget who overheard her whisper, but for better or worse, I'm pretty sure that my messages remain uncommunicated!

Phew! Now I'd better try to find something for me & the little guy to do together.

A little turning point

Both boys had a day off on Monday, a completely unstructured day where the three of us went with the flow. They played quite a bit with each other, and sometimes with me; we read together, watched some TV, and wrestled! Poor Mummy was comprehensively vanquished many times over. But right in the middle of the day, we decided to venture outside with a ball. At least, it began with one ball, but inevitably, S insisted on his own. P tried to get him to just kick it back & forth with no luck, so I kicked with him instead. But that didn't last long before he started to vary the activity in odd ways, and I started to feel as though we were heading down our usual path, where we were all just did our own thing. At that moment, P proposed a game of poison ball. Nice idea, I thought, but couldn't see how we could pull it off with just 2 of us playing, and S no doubt ready to disrupt whatever we managed to play. S, however, claimed that he would play. P set about regaling us with barely comprehensible instructions, which I cut short, but which were replaced by interminable rituals to choose who would be it. S had started buzzing around in overdrive again, and I could see it all failing before we even started. I declared that I would be "it", briefly delineated some boundaries, and told them I would close my eyes & count to 3 so they could move away from me a bit; I just wanted to get things moving! While my eyes were closed, they headed into the house and hid under the desk in a fit of giggles.

Well, it was all good natured, so why should I be upset? I was though; shouldn't we, by now, be able to play a simple ball game? I should interject here that both boys have had some play sessions with friends in the last week where I was struck afresh by how straightforward other kids are; P was chastised by one playmate for talking too much and not just getting on with the game, and another looked repeatedly at S with confusion as he failed to respond to simple requests to do things together; eventually he snapped out of it, but seeing another child perplexed drove home just how much ponderousness I live with in this house. And so, I thought, P had proposed a game of his choice, S said he wanted to be a part of it, and I, the adult, had tried to facilitate, and failed. Yes indeed, we are a ponderous, lumbering bunch, my worst fears confirmed.

So what did I do? Nothing sensible; I had a sulk. I brought the ball in, threw it in the ball basket, told them they were bad sports, and that I didn't want to play with them any more. The effect was instant. P ran outside in tears; S ran to me and all but begged forgiveness. Who would have thought?

So out we went again and, for the first time ever, WE PLAYED A BALL GAME TOGETHER! And it was long, at least 10 minute, till P was losing co-ordination from the effort, and S was starting to ignore the rules and lapse into his old habits. But until then, it felt amazingly good! Should I worry that I brought it all together by throwing a little tanty?

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.

Fraternising with initiates

Just a quick reflection; every time I attend an ASD-specific workshop, I am struck by how easy it is to communicate with other parents; you never have to elaborate, everyone knows what you mean. Even if your particular situation is not familiar to other participants, everyone there is well schooled in the knowledge that with these kids, pretty much anything is possible.

Naturally, this feels good! I wish I had more of it in my life. Today, we are having a new child over to play, and in the back of my mind is the ongoing preoccupation about whether to "tell" the parents about his diagnosis. Many would say no, but I see how P often fails to greet kids, or answer their questions, or respond to their comments, and I can't help but worry that he will be branded uninterested, or even rude. My expectation is that if I inform the parents, and their child voices any problems or confusion about P's behaviour, the parents might simply be able to point out that maybe he didn't mean to be rude or unpleasant, maybe he had some trouble understanding what they wanted, or maybe he's still learning the rules of friendly playing ... whatever, it is just my hope that parents can help to keep the options open. Our family clearly has a lot to gain from such co-operation, but I would hope that others would also appreciate participating in a concrete opportunity to teach their children about being accepting, rather than judgemental, of difference.

And so all this whirls around in my head and I will wait and try to judge if the moment is right when the parent comes for pick-up. I was more forthright about letting people know last year (although I was never entirely without reticence), but at school, the pool of families is bigger, and the way that such information might be treated is harder to judge. Just one of the things I carry around with me, and I'm certain that I'm not the only one ...

Cast Iron Mummy

The boys have gotten into a totally ridiculous rivalry recently over "helping" Q make a smoothie for breakfast. This consists of shrieking insanely when they hear the blender, racing to be the first to press the button, then pressing it repeatedly, the second demanding urgently how many presses the first one did so that he could do more. We've tried to minimise the insane emotional shrillness that this activity triggers by making them take turns (P 1st one day, S the next), and simply lying about who pressed the button how many times, in the hope that, like many of these things, it will just run out of steam; one day, Q will hit the button, and nobody will bother with the charge. But today, S was to be second, and having none of it. I saw red, and held him back while P had his turn. As soon as he was released, S lunged so hard that the drink splashed onto the floor. Q was furious, and I dragged S off to the bathroom till he calmed down. Except that he started kicking the door, so I restrained him, and this time I was determined not to let him go when he was "calm enough", but to make him really sit and snap out of it.

So we held him shifts while we took turns in having our own breakfast, till he was not physically fighting, then not yelling in anger, and then counted quickly to 10 while he was "quiet", ignoring a few sobs that were interjected -- I've never heard a child sob with such attitude. I let go, but he stayed in the bathroom himself for quite some time, roaring, yelling, then plaintively demanding Daddy. We kept away though; for once, he could come to us. Eventually he came out and rejoined the household.

But I was galvanised. Like some kind of initiation ritual, these bouts sometimes leave me with a protective layer, from head to toe, although like little Achilles, I'm sure there are weak spots. For the moment, however, Cast Iron Mummy is In Charge: Cast Iron Mummy demands that every petulant order flung in her direction is recast into a polite request. Cast Iron Mummy has Brushed Hair over howls of pain, and she has Cut Toenails over shrieks of misery. Cast Iron Mummy is fair and just; Cast Iron Mummy acknowledged the suffering with an offering of a lolly each, but Cast Iron Mummy herself is Un-Moved, and will continue, God-like, to dispense Justice and maintain Order for the rest of the Day.

The perfect anxiety dream

Yesterday, P had a friend over, a boy who hasn't visited before. He's a lovely kid, very socially sophisticated and empathetic. They've been in kinder and school together for nearly 2 years and haven't ever really played together, so I assumed that there would not be much rapport, but apparently this boy jumped at the chance to be invited over. I detected nervousness in P, which is new (for me to see anyway). But he was very focused on his playmate and thoroughly considerate and generous, which delighted me no end. The other boy seemed to have a good time too, so it was definitely a success. S was frustrated no end, and kept trying to undermine the play. It was incredibly hard work to keep him calm and distracted, whilst trying to monitor what the others were doing, because as well as it went, P did need some assistance. His conversations frequently turned towards detailed explanations of game rules, or the sharing of instructions about activities which were not strictly relevant, and sometimes, in his nervousness I think, he would ask questions and not wait for his friend to respond. So I would point out when this happened, or sometimes gently move him on when he seemed to be going down a dead-end path, socially speaking. It is amazing to see how far he has progressed, and I have faith that he will go from strength to strength if we can help him over glitches like that.

But emotionally, it took a toll on me. P wasn't the only one who was excited and nervous. I have to watch my own empathy and over-identification. Frankly, it churned me up, seeing my boy taking his uncertain steps at a new social level. I come from a family of emoters -- is that a word? But the mode is to share the emotion when an event occurs, not to think or discuss. So if one relative rings with bad news, the idea is that you will simply feel bad as a result. End of transmission. Recognising it is one thing, transcending it quite another ...

Suffice to say that I feel quite ridiculous being so over-invested in my son's play-date, but being dishonest about it won't help. Add the stress of S's anti-social tendencies, and the fact that Q was interstate at a funeral yesterday, for an adult, but someone else's son, an awful death resulting from mental illness. And swimming lessons are coming up at the school; I am scared of putting my head under water, P is nervous of water and has had less exposure to it than a lot of his peers, and the grandson of one of Q's colleagues, aged 6, drowned at a public pool last summer ...

Last night I dreamt that I was at a sprawling public baths with my kids. It was holiday time, a sunny day, and I thought it would be nice for them to meet up with some friends, but who to choose? It was impossible to reach a decision. After an interminable period of indecision, I realised that I had lost track of the boys. Actually, I realised that I had relaxed and trusted them to stay away from the water, but I was suddenly consumed with panic as I realised that I trusted 2 little boys who couldn't swim to roam freely around a crowded public baths and stay out of trouble.

It's always tempting to detail the bad and pass over the good, but I'll make an effort to record here that by mid-morning, the day has gone well so far. I noticed in particular that as we got ready to take P to school, the usual string of objections to just about everything emanated from S, but being a little older, and a little more competent, he sorted some of them out to his own satisfaction. His top, for instance. He refused to wear what I'd chosen, and asked for a T-shirt that I couldn't find. Having no solution, I decided to go do something else for 5 minutes, fully expecting roars of anger in the background and possibly a showdown further down the track. Well blow me down, next time I see him, he's found the T-shirt himself, as well as put on his own shoes without being asked to, and doesn't contradict me when, after praising him, I point out that the T-shirt is on backwards. He is adamant that he doesn't want help. Same with his bike helmet. And then, after school drop-off and at the shops, while I chat to a couple of parents, I see him having absolutely delightful conversations with 2 little girls he knows, 1 younger, 1 older. Chats about bikes and chocolate cake, not screeching, no face-pulling, nothing aggressive or off-putting. And we have had no conflict between the 2 of us. Knowing that he wants to be in charge of most things, I guess he does relax a bit when he actually controls enough of his environment. We seem to have found a balance today.

Our "holiday"

First, it could have been worse! But it was also not great. We took advantage of Q's need to work interstate for a few days and tagged along. The idea was that it would be a low-key, low-stress, low expense change of scene for a few days. We knew the hotel; it was very comfortable indeed, especially since the kids had their own room! It also had a kitchen which meant fewer stressful and expensive bouts of eating out, and was only minutes from all the indoor and outdoor attractions that we planned to go to.

The plane trips in both directions went unexpectedly well. The basic problem seemed to be that the boys woke up not much after 5 every day. By the time we left the hotel room around 9.30, they'd had it. Although there was fun, there was much more confusion than I had anticipated from them, and more much friction with S than I had bargained for. At the ends of the first 2 days he wailed to go home, and I know that that was due to me being so angry with him. I can't lie, I'd had it with him. But of course it's a horrendous feeling to know that you are making your child miserable, and I resolved on day 3 not to get drawn emotionally into his maelstroms. Here's how it went.

We talked before we went about how Mummy would try hard not to be grumpy today, & they could help by listening, asking nicely for things they wanted, etc., reinforced by the promise of an ice cream for good behaviour. Fifty idyllic minutes ensued. A calm walk to the museum, pleasant interactions, smiling faces for photos, curiosity about the exhibits. Then we went up the escalator to the next floor. Before I could stop him, P let go of my hand and took a few steps forward. S cried, "did he walk up the escalator?" and tried to push past and up as well. I stopped him calmly but firmly, and told P not to do it again. S immediately lost it. We found a quiet corner and sat entwined on the floor so that he couldn't hit or kick me while he calmed down, me releasing various limbs as he seemed quieter, and restricting them again if he lashed out, our version of "1-2-3 Magic". Eventually he got to the point where I could safely let go, but he was far from calm. At some point he managed to say that he wanted to go down the escalator and start again, a perseveration which he picked up from his brother some time ago but which he seems genuinely to have assimilated -- it's weird stuff. I wandered nonchalantly over to P, who had found an irresistible interactive plaything. S eventually joined us, and no more was said.

But the spell was broken and the outing henceforth became an exercise in frustration. Home we trudged, earlier than expected, for lunch and quiet time. We watched a movie together. S misheard some dialogue. I offered the correct version to him. He dug in, even elaborating on his mistake. He does this many times every day. How easy it would be for someone reading this to conclude that the poor child spends his time defending his view of the world from his pedantic, domineering mother who lets nothing slip by. There is only my word that both of his parents put a considerable amount of effort into trying to offer appropriate assistance and support to our children as they experience and learn about the world. My "correction" in this case seemed to me such a minor adjustment, it was demoralising to be contradicted yet again, even to the point where I believe he would prefer to construct a parallel reality rather than accept that things were not quite what he had thought they were. A different version of this behaviour followed. I got out a puzzle for them to do after the movie; he clearly found it too taxing. After expending a considerable amount of emotional energy figuring out when it would be appropriate to offer tips such as "yes, I think that's the right piece, try turning it around", and when to let him work on his own, he decided to express his frustration by hammering random pieces together and insisting that this is how they went. This had the added advantage, for him, of depriving P of pieces to finish the part he was working on. Predictably, after the failure of requests to give pieces back, we ended up in another room in our familiar tangle. I do not know how a child of 3 can function with so much upheaval.

I took them out for the promised ice cream; I was not going to quibble about whether they'd earnt it or not. They moved at a glacial pace, but finally, there was the kiosk, where we stood in line, chose flavours, and the choice was given them of cups or cones with relative benefits explained. Of course they chose what they knew; the cone. I sent them away from the counter while I ordered, and when I turned around, they had found a table, at some distance, and sat down, P's face just radiating pride at getting organised. It lifted my spirit no end. I made it to the table; I was leaning forward with the ice cream; his faced creased with pain and he started howling. He'd crunched his finger under the chair when pulling his seat in closer. I handed S his ice cream while squeezing P's finger, trying not to show my tension as I watched, out of the corner of my eye, his ice cream begin to glisten. At last the time was right, and I handed it over. Both boys were struggling to keep ahead of the drips. I was coaching one, then the other,; "turn it round", "no don't flick it everywhere with your tongue, just take a big lick, like this!", "try using both hands!" It was a full time job, no distractions permitted, or disaster might strike. To my dismay, a young Japanese woman appeared by the table with a camera. I knew what she was going to say before the words came out, and my heart sank. "Can I take a picture with you?" And she meant with me, and more particularly, my cute boys. (This happens to me a lot! Even before kids. Why, I am really not that photogenic!) At that instant, P's ice cream toppled off the top of the cone, over one shoulder, down the side of his thigh and onto the ground. At least that took care of the photo op.

I was up with my purse promising another before he'd drawn enough breath for the inevitable air-raid siren wail. Back in a flash with a new ice cream, this time in a cup. S naturally also demanded a cup. I sprint back to the counter with his soggy cone, return with second cup. Back, seated, big drips on different parts of both boys, so I reach into my bag for wipes, so pleased with myself for bringing some for once. Just as I look up, wipe in hand, P's cup slides over the side of the table and lands face-down. I couldn't help blurting out "how did you manage that?" or something to that effect, jumped up and stood about 10 metres away. I can't imagine what anyone watching thought, but I couldn't risk staying at that table. When he did jump up sobbing and ran towards me, it was for a cuddle, not another ice cream. Five minutes later, he was talking about something else. It was over.

S's ice-cream finished, we started to walk to the playground. P was holding my hand. S suddenly asked, "is P on the right?", knowing that his big brother had expressed a preference for walking on that side of me. And suddenly, I had 2 little boys grappling for possession of my right arm. Bad enough at any time, but given P's recent distress, I was all the more determined to reinforce a) manners and b) Turn-Taking. At least tantrums thrown in parks on breezy days result in a less concentrated assault on the eardrums, and are prone to fortuitous disruptions from oblivious teenagers wandering disconcertingly close to the tantrum-thrower.
Eventually, our adaption of 1-2-3 Magic again got us through without me contributing further emotional disregulation to the situation.

I thought that the "good" day couldn't get any worse, and then it unexpectedly got better. At the playground, both boys fired up and befriended some other boys. There were actually some less than desirable elements to this play, but hey, not wanting to dwell on the negatives (!), it was a happy end to a gruelling day. And it had a sequel. We ended up at this playground 3 days in a row; each time P was too scared to go through a small covered slide, which is normal for him. Still, I did of course encourage him. In fact, On the first day, he was too scared to go down the small, open, but curving slide. I convinced him to go down with me, and then he went down repeatedly on his own. Another one of those times when I feel I can judge well when to help, when to back off. On the 3rd, day, that slide was too crowded. I suggested he try the covered one, which was empty. To my surprise, he started to climb on top of it, then lost courage. But S then copied, made it nearly to the top and sought my assistance to finish, which I gave on the proviso that he actually climb off by himself with my hands on his waist rather than clamouring for me to pick him up. That strengthened P's resolve, and he did the same thing, receiving the same help. And I was delighted; as soon as he got to the top, he climbed into the slide, and went down, feet first, but he did it. And he repeated both climb and slide many times after that. That was a big, big advance for him, it must have felt so good to be that brave. And I managed to make the suggestion just enough times without beating him over the head with it, and managed to assist just enough to show him the steps to doing it himself. So, so satisfying. And, to my surprise, so it was with S, who does not share P's motor skill and sensory issues, as far as I can tell.

It's good to be home!

Freedom and food

What a bizarre feeling: I have just walked away from both of my children, left them with another mother who is taking them home for some play with her kids. I have never done this before. I walked to the park this morning with 2 kids, and have just walked home from the park without them. Forgive me for labouring the point, but I can't quite grasp what I've done.

Every time I have a step forward like this, a return to the simple freedoms of life unencumbered by children, I am a bit kinder to myself. Who wouldn't be a basket case when the prospect of a few hours alone at home is such a bewildering, foreign experience?

So this is probably the high point of the day; not that it's been dreadful by any means, but P was up before 6 (never a good thing), and I took the time this morning to make pumpkin & sweet potato doughnuts from a recipe in Deceptively Delicious, as I happened across a very cheap doughnut maker on the weekend. To my delight, he ate one with enthusiasm, but stopped halfway through the second one, looking truly sick. I tried to press the point this time, because I am getting desperate. What happened? Why did you stop half-way through? Because, he said, he finished the sugar (on top) and then it didn't taste good. This often seems to happen with food; he starts with enthusiasm but something goes wrong, and I feel that his explanation is inadequate to say the least. I found Just Take a Bite very helpful in informing me about the complexity of the problem, as it makes clear that it could be sensory, motor (including not just the mouth but the posture of the whole body), taste, texture, oh who knows!

This incident also called to mind his early days at child care. After his diagnosis, it was felt to be important for him to be around other children as much as possible. These days, that seems to mean day care. I was not happy to deposit him so young, and was given a lot of leeway, I'm happy to say, in staying myself for quite a few months. But the staff were ever anxious to move things along, and were pushing for him to stay for lunch. I used to take him home at lunchtime, as the centre provided a hot meal -- fabulous for most kids, but one more problem for us. He was given plain noodles, and I watched from outside the room, as always with S strapped to my chest. Well, he ate the noodles with no problem, and they asked him if he'd like more. He responded positively. Looks like worried Mum was over-doing it! Then I watched him spoon noodles into his mouth and then open his mouth and let them drop down his front, again and again. Maybe he didn't know when he'd had enough? He might have been spooning them in, I think, because he was offered more, and thought that he had to have them. This is with hindsight; I doubt that he could identify a request, or an offer, from a direction, at that age.

So I've sent him off to play with an array of crackers and breakfast cereal. He's even going off white bread rolls. I find it extremely difficult to remain calm about P's diet.

Micromanaging

So am I a micromanager? And if I am, is that really a bad thing?

When it came to choosing a school for P last year, we were not exactly thorough. We live minutes from the local school, have had other family members attend it, and P would be moving there with a lot of other familiar kids from kinder; basically, they would have to do something seriously wrong in our eyes for us to make the effort to go further afield. Q attended an early intervention information session where, by coincidence, a mother spoke glowingly of her son's induction at the same school. But we also knew a few stories that countered this report. The EI worker who had helped with the transition of the happy mother's child was good enough to come to my home & have a cup of tea with me. She was frank, experienced, realistic & reassuring. She was also involved in our son's transition. The school representatives presented themselves as educators who had seen everything & would handle whatever came their way.

I could say lots more about all of this, but the big shock for me has been, what if your child doesn't throw anything at them? What if you have sat in office after office, for several years, either witnessing first hand, or having explained to you, that yes, your child's difficulties are subtle, but there they are. And every so often, you would discover a biggie, and realise that he's already learning how to detour around things that vex him. But often, you wouldn't even know there is a problem without someone to guide you to it.

So Tony Attwood describes, in his Complete Guide to AS, 4 responses by the AS individual to their condition. The lucky ones, it would seem, learn to imitate others. P is one of these lucky ones. The problem is that he's so good at it that the school, by and large, does not take his condition seriously. I have been nudged, patted, grinned at, or looked at with incomprehension or irritation when I have brought up issues that I thought needed attention, or even when I have asked for meetings or services that the school system guidelines recommend. Alas, I wish I was tough. I am not; I am crushed by the merest hint of confrontation. I spent the first half of the year literally making myself sick as I adjusted my expectations to what was actually on offer at the school, and combed over the evidence to try to pinpoint the problem and strategize to overcome it. I keep coming back to P's high-functioning-ness. But I also wonder about the difference between what a mother sees, or intuits, about her own child, and the powers of perception of the other adults around him.

To my mind, I am fairly well attuned to my child, but even so, he perplexes both of his parents. We went to a psychologist about him last year because of his night wakings. He's never been a good sleeper, but at that stage, he was waking a few hours after he went to bed & crying. He seemed indifferent to efforts to comfort him, but he was not experiencing night terrors; he was definitely awake. The sobs seemed almost angry rather than afraid, and dragged on and on. We had him to the doctor, and he ended up on antibiotics once. But the problem continued, so I suspect that the possible ear infection was a red herring (the only bright note was that his halitosis went away for the duration of the medication, so we introduced probiotics to his diet ...). We could not tell whether our son was in pain, or afraid, or make any connection with him (although he did cry louder if we moved away; that was as much feedback as we got). We felt totally inept. Hence the psychologist, who had no insight into it either. I suspect it had something to do with the transition from one stage of sleep to another, but really, that's a fairly uninformed guess (I did read an informative book on sleep when P was very young by William Dement, the title of which escapes me. I thought he was retired, but now I see he has a website at Stanford! Wish I'd thought to check when we were going through all this).

The point is that even when you are attentive to your child's needs, you will not always know what is actually going on, especially with AS kids. I recently heard Carol Gray put her audience on notice that ASD kids might look like they are in neutral, but actually be in a "slow burn", so when they finally ignite, there will have been little warning about the stress that they were experiencing. So I take for granted that I need to be fairly active about monitoring his moods, double-checking, and looking somewhat laterally for clues about his inner state. I also take for granted that there is no guidebook to help me with this process, that sometimes I will miss things, and sometimes I will fret too much. I decided long ago that if I were to err, it would be on the side of generosity; I would rather pay too much attention than too little. The risk is obviously that I, well, micromanage my son's life. But I truly think that I am treading a pretty good balance. I am realising, though, how easily the rest of the world, not privy to my reasoning, will see me as a thoroughly modern helicopter parent. Well I probably am, and I'm certainly anxious enough to be vulnerable to the suggestion. But I'm toughening up and realising that I need to be proud of my attentiveness too; no-one else will give that to him, except of course his father, although even there, he works full-time, so it tends to be me who thinks through the implications of what I notice, and who looks for a course of action in response.

We are nearing the end of his first year at school. His language skills are too good to qualify for formal assistance, and the school disappointed me by being resistant to having professionals come to the classroom. It became clear to me early on that my suggestions would largely be regarded as interference, and the prevailing mode of thought seems to be that if he's not kicking up a fuss, he is fine. Meanwhile, I see the subtle ways in which he is not progressing in his work, or his social skills. I think it is reasonable to be proactive about these things, and have some support now from a report written by an education dept. representative. The question is how to get the school to co-operate with the things that I believe need to be incorporated into his curriculum.

Food!

Open morning in P's classroom. I often find these sorts of occasions to be the hardest, when I see him amongst his peers; usually, despite my enthusiasm for his progress and my faith that he is by and large managing well, some gulf that I hadn't expected becomes apparent. Well this morning, there were no sad surprises. Indeed, there were some new, positive things. He really seems to be enjoying the little story books that he makes, and is sharing them with us to a new degree, in that his explanations of what is happening on the page seem more coherent. Actually, the pages themselves seem more coherent too. They are all on his favourite themes: Ben 10, Hot Wheels, stuff like that. There are no narratives; he is modelling them on the fanzines we give him, with mazes, spot the difference, etc. And also on the I-Spy books. So they are coherent in that way, all discreet, contained choices, & I am delighted that his efforts are taking a shape that he can be proud of and share with others. My memo to self, though, was to try to encourage some more rudimentary storytelling at home. Although he clearly enjoys these sorts of texts, I have a feeling that stories present difficulties because of his confusion about time (amongst other reasons of course). So I don't think I would be foisting something on him that he doesn't want, but rather helping him to understand the difficult area of temporality, not to mention causality.

I am so aware of how dreadful I must sound when I put this into the public domain, but the hardest thing this morning was his breath, which was akin to gorgonzola. His diet is so utterly shocking, he has had almost permanent halitosis for nearly 4 years. I am hoping that other parents of ASD/AS kids have some understanding and maybe sympathy for me here! Every time I leaned in to hear his tiny voice through the chatter of about 20 parents, children and also younger siblings, I was hit with a foul blast, which, besides being physically hard to deal with, seems to hit an alarm in my brain every time I smell it, that announces that I am failing my son's health needs big time. So I missed parts of what he had to say, which was not so bad, as he was clearly tiring from all the effort. But it did make me irritable. Bad, bad mother ...

Briefly, then, the food thing. I breastfed both boys for extended periods, and wasn't worried when P showed little interest in solids around the 6-month mark. The nurses started getting upset around 1 year, but not me. A few months later he was eating a daily meal of scrambled eggs and strawberry yoghurt. After a few months, this changed to something else. Fresh vegetables and fruit were never on the agenda, so we started making fresh juice, figuring it was better than nothing. Even after his diagnosis, I thought I was just patiently waiting out the picky toddler years, until I heard a dietician who specialises in ASD give a talk. There, I heard about the "white diet", that kids on the spectrum are capable of harming their own health rather than give into hunger, and the comments from parents at the ends of their tethers. That was a bad, bad night.

We made an appointment with this dietician, and have had a few more over the years. Patience is her main message, as forcing the issue will produce anxiety in the child, but keep offering him choices. At the last consultation, she told us that he needed desensitisation, because he was phobic about food; indeed he is. Following a suggestion from a book last year, I put some dried fruit in a clear container in his kinder lunch, but forgot to warn him it was there. Come lunchtime, I get a call to say he has vomited. He tells me it was the sight of the fruit. Fine, desensitise him. Get him to play with, but not expect him to eat, a variety of foods. She was to set up a small clinic, but it hasn't happened. And I haven't done anything at home. Because to supervise 2 children, keep calm when one is extremely reticent, & really needing 1-on-1 attention, is a recipe for conflict in this house. And then, there are only so many therapies you can manage at any 1 time. We recently started an intense specialist gym program, taking over from the years of OT, with some intermittent speech, and social skills sessions with his S. I have been to 2 all-day ASD workshops in recent months, & will attend another 2-day workshop next month. I try to produce various supportive visual documents for him at school, do a bit of reading ... there's only so much I can sanely fit in. So without professional help, I try to simply tolerate giving him almost nothing but bread, crackers, and plain pasta with bought tomato sauce. At least every morning he has a Pediasure and banana smoothie, but that can be touch and go. We do cook fruit and vegetables into muffins, but the amounts are tiny, and the reasons for rejecting the muffins myriad. I hide a seed mix in biscuits sometimes, but that is the extent of our success with concealing things; he is so sensitive to texture, almost nothing gets past him. And he hasn't touched juice for 2 years. In short, if it's not coated in sugar, we can't get anything "healthy" into him.

I keep trying to drop hints to OTs and other professionals that they would make a mint if the could find a financial backer and open up a food clinic locally for families like ours!

Brotherly love?

So I see from the stats that a handful of people across the globe have alighted upon this blog; what I don't know of course is how long they lingered, what they thought, or whether any of them/you will come back, or have already. Hello out there! Any frazzled mothers amongst you?

We separated the boys on Saturday. When I get time alone with P, I get so excited! I feel like a kid going o

n a play date! He was coming down with a cold, so we kept it low-key, staying at home. But we chatted, played games together, drifted apart at times & came back in a lovely, natural rhythm. This is utterly exceptional. I must sound rather shrill, but the little guy manages to defeat every single interaction that I have with his older brother. If P tries to tell me something, S starts to talk over the top of him. I try to tell P something, S interjects with his own topic of interest. If P idly picks up an object, S snatches it out of his hand. He is so smitten with his big brother that he has to have whatever he has, or do whatever he is doing, at the same instant! And S does not respond to gentle attempts to redirect his behaviour, so these disruptions frequently end in tantrums, with P completely deprived of attention, & often nursing an injury to boot. It is so, so, draining, & particularly unfortunate given that P is so in need of help with communication, and with understanding social behaviour. He learns a lot from having a brother, it is true, and I'm sure someone might think that of course the little brother behaves like this, siblings of children with special needs have to fight for attention! But explaining his behaviour this way is just not overly convincing.

At any rate, Q rang late in the afternoon to say he was on the way home. I told P they were coming back in about 20 minutes. The passage of time is one of the most confusing, stressful aspects of P's life. We have tried making charts & timetables & we have various timers around. Timers he understands, and at last he has the concept of how many "sleeps" he must wait for some event; lately he has been asking me if "after" is "in front" or "behind", so he is starting to process these concepts in his own way, but I have not found much that helps (and anyone who has read this far who has any suggestions, please share them!). I thought it would be a good idea to "show" him 20 minutes on his timer so that he could get some sort of feel for what that unit of time felt like. I turned the timer around, knowing he was starting to count in multiples, & counted to 20 by 5s, as they are drawn on the timer. Dad came home a few minutes early, we looked at the clock. End of simple little shared learning activity.

That evening we decided that they could stay up a bit later as long as they played quietly in their bedroom. P jumped up, said "20 minutes" & set the timer, counting in multiples of 5. When it went off, he came & got us, & put himself in bed. This must sound so trivial; my heart just welled with happiness to see him implementing something that I'd shown him. It speaks such volumes to me about his love & respect for me, & I can't say how greatly I am honoured to receive these things from him. But the sadder source of my emotion is just how rare these transactions between us are; if S had been here in the afternoon, he would have interrupted, fought, tried as hard as he could to disrupt that connection. Indeed, when P suggested the timer that night, S almost compulsively cried out "no!", but seemed to lost interest, mercifully. I put the timer on a very high shelf even so. For what it's worth, within 5 minutes of S returning home that afternoon, I'd had to take him to the bathroom & restrain him after he started fighting with P, even with their father there facilitating their play. And the next morning began pretty much the same way, I can't even remember why. So that charging of the batteries that I got last week is wearing out now.

There seems never to have been an opportunity for me to weave between the 2 boys, giving one a bit of this, the other a bit of that, bringing them together for a bit of something else. S has from the beginning been so fixated on the big one that everything for him seems to be through the lens of "am I getting what he is getting?", rather than "do I want this?" I have a very strong memory of S at about 4 months old, in the baby carrier on my chest one rainy day. I had just managed, somehow, to dress P, a toddler with compromised motor skills, in a puddle suit and boots, with the said carrier filled with baby on while my back ached as usual. I put up the umbrella and out we went to find puddles. S was watching P intently. P found the first puddle, readied himself, and jumped, splash, both feet in. S, to my amazement, let out a heartfelt laugh. He was delighted. It was the first time I'd realised that already, he had figured out that this other little person was part of his life. Little did I know how complicated that intense love would be for us all to live with.

As I write, I am thinking that I need to increase the sessions with the OT, and perhaps talk to a psychologist. I did last year, & got some hints, mainly about anger management, & also about ensuring that I treated the boys equally. This is excruciating, as it means, apparently, even allowing the little one to copy P's dreadful eating habits (like many kids on the spectrum, P's diet is dreadful, no doubt the subject of a future post). I needed to trust, she said, that the neurotypical (NT) child will eventually grow bored with the limitations that the older one has set for himself & move on to try new things. I feel there is a lot more I could say about this, but it might be time for us to do a bit of painting, which I actually promised a couple of days ago, so it's very overdue!

The present and the other early days

P had his first school excursion yesterday. My attempts to find out how it went put my in mind of Tim Page's wonderful essay "Parallel Play" in The New Yorker. I read just the first page again after my son came home. Thanks Tim, wherever you are, for you humour, your honesty and your insight; without your wonderful account, there I would have been, stressed about everything he didn't get out of the trip. His account differed substantially from yours, but I felt like I was able to get more of a handle on where he was at, & we did indeed progress towards a more mutual understanding of how the day went as a result.

Otherwise, more of the same old ups & downs here. Maybe now is time for that return to the early days with S. I was 7 months pregnant with him when we received P's diagnosis. I was already worn down, almost worn out; it's pretty obvious how that would have added to the load. Except that, for some reason, I was never concerned that S would also be at risk; blissful ignorance really, since the risk does increase with every birth, and the severity of the autism often increases too. And thankfully I've not had to say I was wrong about that, although, as I've indicated, I've had many wobbly moments since, wondering if there was something about him that I was missing. And I should say that "thankfully" indicates not any dissatisfaction or other slight upon my oldest, beautiful boy; it is a reflection on my ability, or fairly, their parents' abilities, to collectively meet their needs. I do not know how I could have survived 2 children so close in age, with so little support for myself, and such high needs from them. Not that S turned out to be an easy baby, but the issues were different.

A slightly less easy birth, and a lot of anxiety from me about leaving P for the 1st time ever, & not knowing how his father would cope without me overseeing. Sounds egotistical, but I was with him day & night & he was a boy who fell apart at the drop of a hat. I was already behind the 8-ball before I left hospital. And feeding S was painful, but no-one seemed interested, assuming, I suppose, that since I'd fed one, I'd work it out. But I didn't, & within days was crying in misery at the sight of my hungry baby. Again! Different issues this time; S, it turned out, didn't have enough lower jaw to attach firmly. I'll skip the technicalities, but I was advised it was a matter of waiting for it to grow over the next 5-6 weeks. And indeed that pretty much sorted it out then, but the problem, bizarrely, came back a few months later -- maybe the topic of another post, maybe not.

Already tired, already in pain, already questioning my own adequacy. And in the midst of it all, that wonderful introduction to the world of special services for P, trekking to this or that office or clinic, sometimes with the assistance of the one saintly family member who ever offered me help, or sometimes paying for some assistance with the kids (I'd started doing this around the house when P was about 7 months old -- fantastic that we could afford it, but in my mindset, more proof of my inadequacy). So I'd be feeding or jiggling an irritable baby while my back burned & P bounced around a room somewhere or other stressed & desperate to escape, & me barely able to put out a hand or offer anything to calm him because my hands were well & truly full. So therapy seemed to consist of places & activities that deeply upset my very upsettable ASD child. And then we'd make it out & for hours afterwards we would all live with his disturbance.

I lost a lot of weight when I breastfed P, around 6-7 months in, but this time, in sheer exhaustion, I would down huge quantities of chocolate, generally in the early afternoon, just to try to keep myself moving. I've never been one for illicit drugs: I suppose someone else in my situation might have turned to something a bit more pharmacological! The days were absolutely relentless. I could barely get S to sleep, & he would wake up quickly if I put him down. P still needed a sleep, & as with all transitions, it would begin with a tantrum. And now carrying S constantly, he couldn't get as much of me as he wanted, which exacerbated everything. I bought a wrap so that I could carry S on my back, but only wore it for the 1st nap of the day, as I was never confident to put it on when I was alone; his father would help me into it before he left for work. Half an hour of sleep, and he was awake again. That was all the time I got, face to face, with my toddler.

So, nature or nurture? Plenty of incriminating evidence here, isn't there? Mother not coping, of course baby will pick this up! Ah, but of all the things I castigate myself for, I absolutely know that the baby brings its own business to the table. I guess you could say that with his temperament and the realities of his new-born world, it was not a recipe for harmony.

The Kinder Conundrum

Yesterday late morning I began preparing us both for the inevitable battle about attending kinder that afternoon. When I say inevitable, it has only been 3 sessions, but his distress is palpable. (A brief aside: gee it would be nice if kinder staff would refrain from snide criticisms when a child doesn't settle in well, all but accusing the parent of setting him up for failure by doing this or that, or, mainly, by not leaving promptly! When my child is distressed I absolutely reserve the right to stay a bit longer for comfort, not to mention to observe what it happening in the room. Oh, that I learnt to be so forthright with the years of dreadful drop-offs & pick-ups I had with P!). For the hours after we got home, he got much attention, we bought strawberries out of season for the fruit tray, new books from the library ... and then it was time to go. He is amazingly articulate compared with his older brother, & clear as crystal, if a tiny, breaking voice from a face pressed into my shoulder can be any such thing, told me he didn't want to go first because of rejection by a particular boy of whom I know he is very fond, & then because nobody wants to play with him. I did my best to respect his feelings & to give him some positive thoughts & strategies, then to assure him that nothing fun would be happening at home, then to bribe him with smarties if he went. I ended up carrying him sobbing. He didn't fight, but he didn't want to go.

I spent time looking at his kinder book with him. Some other boys came over. He relaxed, but when he spoke to one of them, a rather quiet little boy, he talked at full volume about 2 inches from his face. The boy just turned around & went to another activity. Eventually I had to just hand him over sobbing. I spent the time at home distracted & sad. When I picked him up, he was a different child. Apparently one of the teachers engaged him in a conversation about Bakugans, & that put him back into familiar territory. He was joyful, light-hearted, friendly, adorable. He told anyone who would listen that he was going home for his special treat, even the little boy who had rejected him, & who just looked away; I have to say that he doesn't seem to have very well developed social skills himself. He said heartfelt farewells to everyone he passed. And when outside, tried to climb the fence as he'd seen this little boy do many times; he does this after every session.

Shame that I got up this morning to a huge tantrum, but my goodness, how much easier it is to take an out of control child into another room and help them quieten when you've had some positive experience not long before. I think what gets to me are the long, long stretches where nothing seems to get better, or the same old difficulties keep coming back, and I feel like I must simply be doing a very bad job! But seeing my little boy happy & relaxed really gave me a shot.

Competing needs

This morning's school drop-off was a dog's breakfast. We arrived early enough for a before-school play, which P desperately wants, and which consists of him imitating some toy or computer game but with no discernible structure or goal; however, no matter who is there or what he does, it almost always ends with him exclaiming, "but I didn't get to play anything!", & subsequent degrees of melt-down. He has had trouble with transitions forever, and this seems to be the latest manifestation. I try to figure out what the essential components of this play session are for him, but haven't cracked it yet. I know he has a good friend who plays these "games" with him at recess, but it seems to be parallel play at best. He also asks me to join in sometimes, so I try to take advantage of the situation by applying a few Floortime principles, and this is where my frustration really starts to overtake me. He starts to respond, but S does his level best to disrupt. He has of course been included in all negotiations about play but almost compulsively opposes every suggestion or action that is not his own. And for me, it's not just about a mediocre play session, but about a lost opportunity to open up P's horizons.

I have not delved as deeply as I would like into the literature on sibling rivalry. Suffice to say that it dominates much of our daily life. It's hard to disentangle the specifics of the sibling relationship from the other effects of S's temperament on family life. I have heard Tony Attwood say that in a household with an autistic individual, the whole group will march to the beat of the autism drum. In our house, that has not been true since S was born. His drum is by far the loudest.

But worse was to come. S knows when we are leaving to wait at the school gate for me with his scooter, but today I saw him in the distance going through by himself. I yelled, and a couple of mothers leapt into action. By the time I got there, one had his scooter, one was dragging him from a nature-strip back to the path. He was beside himself. He collapsed into my arms and heaved with emotion. As one of them said, all the yelling probably frightened him, but knowing him as I do, anybody taking hold of his scooter, giving him an order, stopping him from going about his business, combined with the suddenness, would have made him volcanic with rage. He at least accepted comfort from me, and clearly there was no place for a telling off after all that distress, but it seemed necessary to say something about what had happened. When he seemed to be calm, I reminded him, in a gentle voice, that he needed to wait for Mummy at the gate. "No!" he yelled. A few more attempts to make the point calmly, more defiance from him. My stress levels were somewhat elevated by this, & the previous stuff in the playground, & a little by the parade of mothers eyeing us sprawled motionless on the footpath surrounded by scooters & helmets (this time not as bad as many of the public parenting disasters I've had. Perhaps I'll elaborate some time). And so despite myself I did eventually snap "then you won't be allowed to ride your scooter to school any more!" Then I got hold of myself again. Sometimes the days feel like extended attempts at provocation. Too often in the past they got the better of me. The older the boys get, the less exhausting they are, & the less this is a problem. But still, the theme that I think will keep coming back through the posts makes its appearance here; I do try, try, try to model calmness to my children, but so often my efforts seem utterly inadequate. I often feel like there is just not enough of me to do this job properly.

I've asked the therapist we see about ODD, & she says that besides being too young for a diagnosis, she suspects that it's more about emotional regulation with S, feelings that are just too big to handle. That certainly makes a lot of sense to us: people are always saying "it's his age", but his parents remember a baby who howled with anger from very, very early in his life. Perhaps next time I'll go back to those early days with him.

The early days

Since my post yesterday, S has had one lovely play session with a boy we haven't seen for a while, & one reasonable session with a couple of other kids. Also a meltdown that resolved without hitting (from him) & screaming (from me!). I therefore feel some relief, & a bit more confidence that the things we are doing to help him manage his strong emotions are actually working for the most part.

So maybe this is a good time to go back in the mists of time, all of 6 years, to the beginning; the birth of P. The mists of time is not entirely facetious; I don't think, apart perhaps from my own childhood, that I have ever lived each minute so intensely, so ... minutely, as I have with young children. It feels like a very, very long stretch.

After an uneventful pregnancy and a "textbook" labour, my new life as a mother began to unravel very quickly. I remember that my partner, Q, took 2 weeks off work when P was born, & that early in the 2nd week, as I thought about how I would manage with him gone, I started to experience a sinking feeling: things were not panning out as I had expected. I was an older mother, P was planned & very much wanted, & Q & I had been together a long time, felt we'd done a lot of things together & that we were "ready" for this new phase. I had listened carefully (I thought) to other mothers' tales of being pushed to the limits, and concluded that I simply had to be there 100% & I would be fine; no part-time employment, no worrying about housework, no stretching myself too thin in any way, & making time for myself to be replenished on the weekend; I had a dancing class timetable! We had a plan, & I thought that would do the trick.

The pain of childbirth was beyond my capacity to imagine, and yet in the early months it paled compared to the inexplicable agony in my shocked nipples, the needling misery of the blisters that followed as the pain clouded my ability to attend to P's attachment, & then the burning, throbbing ache of mastitis, again & again. Having always been prone to back pain, I discovered, despite years of yoga & diligent pilates practice during pregnancy, that carrying such a light bundle almost without break was quickly taking a toll on me too. I had expected times when he would lie on a bunny rug while I gazed down & we cooed lovingly at each other. And I would be able to leave him there for a minute or 2 while I nicked to the toilet or put the kettle on or threw together a sandwich, maybe even stretched a bit by his side. And then, as a lactation consultant suggested, I might feed him to sleep and gently snuggle down next to him & rest myself.

Six years on, I'm not ready to laugh yet at my own delusions.

And the sleep deprivation. I had thought that jet-lag was as tired as I would ever get. I was so monstrously tired. I ached, pretty much everywhere, I could barely perform my own bodily functions without the accompaniment of frantic screaming. When I did try to nap, I was without exception woken within minutes by an ear-piercing scream. And I would go to the new parent sessions with the maternal health nurse, or the private new mother sessions I attended with a midwife who was committed to natural parenting practices. At the former, I paced the back of the room while most babies slept in prams & bassinettes (that was when I could get there at all). At the latter, I bounced on an exercise ball, or got there early to nab the only beanbag so that my back could rest while P napped upright with his head on my shoulder, while the others lay their babies quietly on blankets & cushions on the floor, their mothers' hands free to do ... anything they needed to do!

I was quickly exhausted, like a marathon runner at the finish line, but I was expected every minute of every day to get up & run the whole race again ... I remember early in the midwife's group talking about hunger & breastfeeding. After the others had described their ravenousness, I offered, bemused, that I really didn't feel hungry at all.The midwife, usually keen to explore any statement offered, simply declared that I was so far from meeting my own needs that my body was suppressing its own sensations; from that, I understood that I was in survival mode.

On top of the physical depletion quickly came the debilitating doubt in my own abilities. I was failing to keep my baby calm & content. Well no, I was not failing. I was constantly working, working to calm him. But my efforts seemed so enormous; was I missing something? How were other people managing not to be so utterly spent? Obviously, there is an element here of me being harsh on myself, because logically I know that many new parents are plunged in over their heads. But somehow, it seemed that we sunk deeper, & for longer, than anyone we knew. I had been inclined before birth towards what I would loosely term principles of attachment parenting, so amongst my tactics for minimising stress, I had told myself that I wouldn't have battles about feeding, sleeping, forcing the baby into prams or other contraptions when I knew he'd probably be happier on my chest. I really couldn't have done more with my own body to comfort him. And it still didn't work.

I kept looking for help; classes, books, visits from consultants ... William & Martha Sears' Fussy Baby Book was a huge consolation. I instantly felt less incompetent. But I slowly but surely began to feel alienated from other mothers around me. Nobody seemed to be on the same page. Q & I both found ourselves staring at family scenarios when we went out, drawn despite ourselves to the contrast with our own new life. And it was hard not to find ourselves lacking.

Fast forward to P at 2. Routine checkup with the maternal nurse; she is concerned because she can't engage him at all. I tell her about how hard I find my life with him, his little obsessions, how hard I have to work to keep it all together. I know she is thinking autism, but at that stage in my life, autism was children rocking in a corner with no engagement with the world, and no emotional attachment to their caregivers, which was certainly not my boy. I deflected her concerns & left. A week later she rang & said she hadn't been able to forget about it, had consulted with colleagues, & had some names of pediatricians for me. Even if it wasn't autism, she said, I had indicated that I was struggling to meet his needs & I could do with advice anyway. That convinced me to make an appointment.

And of course, I have discovered well & truly that an autism spectrum disorder can mean a great many things. And with hindsight, it explained so much of those chaotic first 2 years.

Introducing us, sort of

My first ever blog post; as far as I am concerned, a public diary.  I feel slightly queasy thinking about the exposure.  However, my need for clarity and some reassurance about the onerous, overwhelming experience of motherhood, coming from a dysfunctional family myself, with kids who are deviating from the norm, takes precedence over those qualms.

I think a short history of my time as a mother would be appropriate, but it might have to wait.  The youngest of my 2 boys (we'll call him S) is a few months away from his 4th birthday.  He's home sick from kinder this morning, so my time here is even more limited than usual.  Sad to say, though, that his illness is timely, since last week I struggled to get him to his 2 short kinder sessions.  I'm pretty sure I know why he didn't want to go; there have been numerous recent comments from him about this kid saying they didn't want to play with him, that one not liking him, another not wanting to go to his house ...  When I come in at the end of the session, I often see him looking quite alone, muttering to himself in an angry monologue.  This correlates with the child I know at home.  I also know from his play with his older brother (we'll call him P) that actually, he won't really join in, share the play, risk not being in charge.  I'm pretty sure he is dominating, and possibly frightening, other kids at kinder.

For several months he has been attending a clinic where an occupational therapist attends to his emotional regulation and his social skills.  The sessions have been terrific.  Much has improved, but things seem to have gone backwards recently.  The therapist wants to come to kinder, which I think is great, and on telling the kinder staff, I discovered that they have had concerns about his behaviour for a few weeks too.

When I heard this, I shifted from concerned but proactive to being weighed down by a heavy, dark cloud of anxiety pressing down on me, and a tight, hard fist in my gut.  Both very familiar from looking after my oldest child, who was diagnosed with autism just after his 2nd birthday (he is now 6).  If I reeled off a list of S's characteristics, he'd be sounding a lot like another ASD case, but suffice to say for the moment that he clearly is not.  If there is a name for his problems, it lies elsewhere, and I am certainly not looking for one (although the term "oppositional defiance disorder", at face value, makes a lot of sense to his parents).  But I am sorry to confess that much of his angry, demanding behaviour has driven me to frustration and anger rather than sympathy.  Let me qualify that by saying that I am his mother, I have not spent the years at war with him!  But what I would regard as the commonplace techniques to soothe and redirect difficult behaviour have generally been ineffective, and my sense of competence, not to mention the satisfaction that I might feel from watching my children flourish, has been quite seriously eroded.  And now, I feel like I might have more than a "high needs" son on my hands; I'm worried that the difficulties that we have experienced in one form or another since his birth might actually require something closer to the level of intervention and therapy that P has needed.

And on that note, I will take the plunge & commit this to the public eye!