Monday, October 18, 2010

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.

Thursday, October 14, 2010

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 ...

Sunday, October 10, 2010

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.

Friday, October 8, 2010

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.

Wednesday, October 6, 2010

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.

Monday, October 4, 2010

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!