Good Enough Mum

The Day of the Three Things

The title of this post, by the way, is an extremely obscure reference.  Full marks to anyone who gets it.  Anyway, our particular Day of the Three Things went very well.  Details as previously promised:

Thing The First.  The TISM, down at Jamie's soon-to-be-new school.  This was due to start at 9.30, giving just enough time for us to get Jamie to nursery and ourselves and Katie down there.  Also present were Manda and Jane from the nursery; Mrs K., Jamie's soon-to-be-new teacher; Sharon, the area SENCO; and someone whose name I've forgotten, who was SENCO for the school, if I remember rightly.  We all squeezed into a tiny room just opposite reception, with a box of toys that Katie played with happily while the rest of us talked. 

Sharon started out by going through Jamie's strengths, of which there are many, and the nursery staff talked about what a lovely little boy he was and how much they were going to miss him.  She went on to discuss things that had come up at the LISM last December as being problems and what we'd done about implementing some of the solutions discussed then, such as the use of more visual prompts.  Although Jamie understands spoken language perfectly well, he does, like most children on the autistic spectrum, respond well to visual prompts such as little pictures showing him what comes next in his routine, so Barry tried a couple of those last winter - one giving the sequence of getting dressed, and one showing which nights of the week he had showers and which nights baths (at the time, Barry was putting him to bed five nights a week and he had showers on those nights and baths on the nights I put him to bed).  They're both now obsolete (he no longer has to wear a nappy during the daytime (hooray!) and thus that part of the getting dressed routine no longer applies, and he now has a bath with Katie every night), but they did seem to help at the time.  Manda also tried using a 'surprise card' with him (a little picture of an exclamation mark) to give him warning when something out of the ordinary was coming up.

The biggest current issue is the toilet training.  Jamie has (after a long slow struggle) reached the point of doing really well with staying dry during the day, but still hasn't really figured out how to poo on the toilet.  This is not a terribly uncommon problem for autistic children, and can be due to them not interpreting their bodily sensations in the same way - I think he just can't tell when he needs to go.  As you can imagine, this is something of a problem.  At the time of the TISM, however, it so happened that there was light at the end of the tunnel - the weekend before had actually been one of the very occasional times when he did manage to poo on the toilet, I'd run round looking for a suitable reward, Barry had produced some gold star stickers, and the fascination of watching us snip off a piece with exactly three gold stars on it and then getting to peel these off proved to be sufficient to motivate him to do the same thing several more times over the course of the following week.  So we may be getting somewhere.  Or we may not, since he's since then had several non-successful days and it may be that the fascination of the Gold Star Stickers has worn off.  We shall see, I guess.

Other than that, I have no worries about him starting school, and think he's going to love the place.  We talked to Mrs K. about some of the things that make him tick.  When he's getting a bit overloaded and needs a few seconds time-out for himself he'll shout "Loading!" and insist on a few seconds of counting to himself before he can go on.  ("I'm loading!  You shouldn't interrupt people when they're loading!" he told me very indignantly once when I'd unwittingly asked him to do something-or-other.  Clearly I'd committed a major etiquette faux pas.)  The others were delighted to hear that and all commented on how great it was that he'd learned how to do this to give himself a break when he needed it - Jane pointed out we could probably learn a lot from him.  We also warned her of the importance of warning him of any changes in plan - it makes an enormous difference to how well he can cope, even if he's only warned a couple of minutes before things happen.  What helps hugely here is that he understands how dates and calendars work, so it's easy to warn him in advance of things that are going to happen (as, you will recall, I did with the Day of the Three Things itself). 

"But you need to be careful if you've got a calendar on display," Manda warned Mrs K.  "I once looked up and saw him balancing on the back of a chair, and when I called out 'Jamie, what are you doing?!' he looked at me and said 'Manda, this calendar still says March, but it's April!'."  (Ah, yes.  I have also had this experience.)

The person whose name I can't remember asked whether Jamie had any special interests that particularly fascinated him ("Numbers," we all chorused), and whether he had a tendency to run away when things upset him (not usually, but he can get it into his head to take off somewhat unexpectedly, a longstanding issue for us on shopping trips).  Barry also asked whether the school computers had the CBeebies site on them.  "Jamie's worked out how to log into live television from that site" he explained.  "He works out lots of stuff like that, just fiddling around.  He knows how to change the desktop picture on his computer and he does that every few days."

"Sounds like you're going to need a surprise card," Sharon concluded to Mrs K.

Thing The Second

The educational psychologist arrived a little while after we got back.  She talked about her morning with Jamie, and was very pleased with his reading and number abilities.  She asked us several questions about various aspects of his development, and warned us that he isn't likely to qualify for statementing at this point.  In plain English, this means we don't get any other extra funding for him beyond the lump sum already approved for the school, which is to be used for all children with special needs starting that school next term (there are four, apparently) and can be used/parceled out as the school sees fit.  If it turns out that he can't manage without extra help, we can apply for statementing then.  This will mean a time lag in getting help if there are any problems, but that can't be helped - I think she's got a fair point, and that Jamie probably would be turned down if we applied now, and that in itself automatically means a six month wait before you can apply again, so I think we probably are better off waiting to see just how things go in practice.

Thing The Third

I took Jamie to Big School, and, as I'd expected, he adored it.  He found a hanging display of numbers straight away and started reading them out.  Mrs K. saw him and came over, but by then he'd spotted the box of sticklebricks on a nearby table and charged over to them.  "Sticklebricks!  Here's a red one, a yellow one, another yellow one..."  After a few minutes of Mrs K. trying to chat to him while he kept up his excited monologue about the sticklebricks (in which he did, though, address Mrs K. by name once, so at least he was talking to her), I showed him the finger sums on the wall, and he liked those as well.  Then he found a toy that had pieces of plastic with holes in that you could nail to a board.  Then he had to check out the computers and teach himself how a couple of the games worked (he found the year's curriculum in the process, but I steered him gently back towards the games).  A little girl came and played on the computer next to him and Mrs K. asked Jamie to explain to her how to play the Teletubbies game, which was one he knew from home.  And he did.  "First, you must click on 'Easy' or 'Difficult'.  Next, click on the arrows to guide Po down the hill.  Very good!  Well done."  He also found a three-minute hourglass-style timer on one of the shelves and played with that, and when I finally managed to get him out of there some time after the session was supposed to have ended he found the series of numbers painted on the playground for the children to play on.  "This one is a jumping pad, and this one is hopscotch, and this one... is a circle jumping pad!"  He had to jump on each in turn, of course.  I think Big School is going to be a success.

Meanwhile, I have been through the stack of forms provided to Barry at the first part of the induction, signing permission slips for our son to have his photograph used in school brochures/use the Internet/go on school trips/have cooking lessons/eat the things he cooks/get free milk.  I've filled in a detailed booklet about his abilities and likes and dislikes, completed a form saying what day we'd like the home visit that the teacher makes to all parents of new students in the first few weeks after they begin (yes, she does!  How good is this school??  Damn good!), and written a cheque to cover various random activities and school meals.  (Hang on a sec - just registered that fully in my mind, and Jamie isn't even going to be having school meals!  We send him with packed lunches.  Must remember to find out what money is due in that case.)  Now all I have to do is order his school uniform, PE kit, name labels, and the crowbar for prising the boy loose at the end of subsequent visits, and I think we'll be just about set.

On this particular Thursday

"On Monday, 8th June," Jamie told me excitedly as he got ready for bed, "we will sing 'Happy Birthday' to you!"

"That's right!" I agreed.  (It wasn't, as it turned out - in the general rush of getting dinner done and presents opened and two children upstairs to get ready for bed, we all completely forgot about the singing - but it's still very touching to have your four-year-old son remember your birthday and do so with such gusto.)  "And  on Thursday the eleventh of June, we are going to do three things that are different from usual.  Can you remember what these three things are?"  I'd been through them several times already, but wanted to reinforce the plan as often as possible before the day; Jamie deals beautifully with changes in plan as long as he knows about them beforehand, but spring them on him and there's hell to pay.

"A lady will come to nursery," Jamie recited with careful concentration, holding one hand aloft (I think he meant to count the Three Things off on his fingers, but hadn't quite got as far as that in mental organisation).

"Yes, that's right," I agreed.  I'd been in two minds about whether to even bother telling him about the educational psychologist's visit, as I honestly don't think that the presence of a strange adult at nursery would be one of the things that would register on Jamie's Strangeness Radar as being disturbing and I was worried it would just give him too many things to remember, but I figured, what the hell, might as well.  It had been the right decision - he was remembering all three things without difficulty.

"And then everybody will go home..."

"After nursery is finished," I interjected hastily, with visions of him expecting all the other children to evacuate the nursery as soon as he'd noticed the educational psychologist's presence and thus registered the First Thing as being done with.

He waved me to silence.  "And Manda and me will stay at nursery and we might do a jigsaw or read a book.  And then Mummy or Daddy will get me and I will come home and have lunch..."

"...and maybe do some playing or watch a programme," I added, wanting him to have some idea of the timing of the whole plan - Jamie was quite capable of deciding it was time to set out the instant he'd finished lunch, and it could get a little tiresome to be fielding impatient shouts for action for the next couple of hours until it actually was time to leave.

"...and then Mummy and me will go to Big School!" Jamie finished triumphantly.

"Very good, little one!  You've got it."

And thus the conversation went, with minor variations, on each evening in the several days leading up to June 11th.

We also have Three Things concerning Jamie and his transition to Big School scheduled for tomorrow day, though not all of them will be the same things.  Our First Thing is going to be the TISM, or Transitional Inclusion Support Meeting, the meeting held between all interested parties when a child with special needs is due to start school in order to discuss what needs to happen to smooth his transfer and how it can best be done.  Some time after we get back, the educational psychologist, who will by then have spent the morning observing and possibly playing with Jamie, will come over to our house to discuss him with us (hence Jamie staying at nursery with Manda after everyone else has gone home, the plan being to allow us to discuss him without him being around)¹.  And the Third Thing, of course, will be the one Jamie already stated - I'm going to be going with him to spend a short period of time visiting his soon-to-be-new classroom and teacher at Big School, as the second part of a three-part induction² (which, unlike the other Two Things of the day, is nothing to do with Jamie's special needs but is the school's normal procedure for all children prior to their start date).  So that's the day's schedule planned out.  I shall update you in due course.

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1. Yes, this does indeed mean Manda doing overtime purely in order to babysit our son, and, yes, she volunteered.  It would not surprise me terribly at this point if I were to go into nursery to find that it was bathed in a pearly iridescent glow and the staff had all grown haloes.

2. Part The First was for a parent to go along sans child for an evening meeting a few weeks back, and Part The Third, in natural progression, is for child to go along for a few visits there sans parent.  Barry, who was the one who got to go to the parents-only meeting, came back with a new school bag and various paperwork and leaflets about this and that and told me that he'd met Jamie's teacher-to-be and various other people and been shown a short film about packed lunches.  The film was sponsored by some group like the Flour Appreciation Society or the National Coalition of Flour Producers or something of the sort.  It put heavy emphasis on bread products, with a brief branching-out into pasta.

Patchy

Jamie had his latest orthoptist appointment last Wednesday.  I must confess here that I'm actually an appointment behind, since he had one in, oh, probably about last March that I never got round to recording here.  Not that there was much to say about that one, but it was the next one after the September appointment in which we had been advised we could try stopping the patching again, and the appointments after no-patch periods are inevitably tense moments as we wait to see whether we can continue with the non-patching or whether it will have led to Jamie's weaker eye deteriorating and whether we'll have to start up again.  Fortunately, at the March appointment, the former was the case - the orthoptist (a different one from usual) declared Jamie's eyes in good enough condition to remain a patch-free zone, and I got to breathe easy again. 

Having done my tenterhook-hanging on that occasion, I didn't worry about this one at all, having rather foolishly assumed it would be a mere formality; I was therefore a touch blindsided (if you'll pardon the unintentional pun) when Barry reported back to me that we're now back on the patching regime again.  For two hours a day.  Oh, well - it's going fairly well for the time being.  Jamie does still pull glasses and patch off pretty frequently but submits to having it put back on again, so we seem to be OK as long as we keep a close watch on him.  With a bit of luck we should get it down to an hour a day by his appointment next September, which would be good considering he'll have started school by then and we'll have that much less time each weekday available for patching.

Speaking of appointments I didn't blog about, there was also his last appointment with Dr M., which in fact wasn't with Dr M. when it came to the point - that one was Friday 6th February, which turned out to be the end of a week of country-paralysingly heavy snow, and Dr M. ended up getting stuck in the nearby city with all the clinic notes.  His clinic was thus taken that day by Dr H., a colleague of his armed with only the brief summaries on each patient that Dr M. had managed to pass on to her in a hasty phone call.  In Jamie's case, the brief summary was apparently that his ASD had been diagnosed last August and that I was a GP.  Dr H. was a cheerfully breezy woman who was quite a contrast to Dr M. in personality - she reminded me of an enthusiastic and good-natured headmistress - but she was just as pleasant as him, and took Jamie's climbs all over the consulting room (not the formalin-smelling one on this occasion, at least) in good part.  She asked us about his sleep and eating and the progression of his toilet training and various other things which I forget, talked about getting him statemented for school, and recommended some parent training days on autism which neither of us have actually got round to getting to at any point.  That was about it.  We now have a slew of school-related stuff coming up this Thursday, so at least I'm briefly up to date on my reporting of appointments before falling behind again.

And now, dear readers, I seek your input.  I always meant to set up a specific category for autism-related blog posts as soon as Jamie's diagnosis was formalised, but never actually got round to it until, well, now.  So, given my penchant for obscure and quirky category names... what should I call this one?  I'd like to go for 'Spectral' (as in autistic spectrum disorder - geddit?), but that might be too obscure for people visiting the blog.  'Adventures in Autism' might be good if I hadn't already gone with that theme for the category of squint-related posts, but, given that I already do have a similarly-named category, I fear it would look repetitive.  Should I go with 'Spectral'?  Or does anyone have any other ideas?  And, while we're on the topic, do my current categories make any sort of sense to anyone apart from me, if the answer to that one is 'No' then is anyone troubled by that, and would anyone like a 'Guide to Sarah's Bloggy Categories' post at any point?

How the Good Enough Mum blog got its name

Well, the end of another month is approaching, which means I feel I should get a post up - otherwise there'll forever be a gap in my monthly archives, which disturbs my obsessive-compulsive soul far too much.  Which means I've been mulling over the question of what to write about.  While I have no shortage of potential post topics, I do have a shortage of potential topics short enough to complete a post on in the few minutes of spare time likely to be available to me between now and midnight on May 31st.  I had in fact sat down to have a shot at writing about something totally different, when I suddenly remembered that the topic of how I chose this blog's name was one that I'd saved up for precisely such an occasion.

You may, of course, have recognised the phrase as a reference to Winnicott's theory of the 'good-enough mother'.  If so, you're right, but only indirectly so.  (In fact, when I finally got round to looking up Winnicott's theory, I discovered it didn't have that much to do with the don't-sweat-the-small-stuff attitude I'd had in mind.)  I actually chose the title in homage to a post made four years ago on the Chez Miscarriage blog. 

For those who never read it, Chez Miscarriage was among the most well-known of the many infertility blogs on the 'Net.  The author, who posted under the pseudonym getupgrrl, was a DES daughter who was struggling - unsuccessfully - to carry a child to term.  After more miscarriages than you could shake a curette at, she finally opted for gestational surrogacy, had a healthy son, and ultimately exited the blogging world in a fog of psychotically sleep-deprived bliss.  But, as you can imagine, her surrogate's pregnancy was an incredibly tense time for her as she tried not to let herself worry about all the things that could go wrong.  One day, to distract herself from the nail-biting, she invited readers to post their experiences of what she termed Mommy Drive-Bys - those moments when a friend/relative/acquaintance/random stranger you just passed on the street decides that you can't possibly continue parenting without the benefit of their sage advice, and they'd better let you know exactly what you're currently getting wrong in your attempts to bring up your child.

The comments flooded in in their hundreds, ranging from the heartbreaking (mother who tried everything possible to get her extremely premature brain-damaged baby to nurse and ultimately and tearfully had to give up and resort to formula-feeding, only to be asked scathingly by someone who didn't know the history "Did you even try to breastfeed that baby?") to the hilarious (man who adopted a baby together with his male partner, asked scathingly "Did you even try to breastfeed that baby?)  But there was, apparently, a third category - misunderstandings (I put that charitably) of the original request.  Apparently, there were a number of people who took it as a request to provide, rather than relate, a Mommy Drive-By; they used the comments thread to make it clear just what category of Bad Mother (stay-at-home?  Work-away-from-home?  Formula-feeder?  Attachment Parent?  Non-attachment parent?  Person who dressed differently?) they disapproved of, and why.

I say 'apparently', because we didn't get to read them - getupgrrl deleted them all, and more power to her.  The reason we got to hear about their existence was because she was spurred into further action by a comment decrying all the 'stupid and dangerous' maternal behaviours prevalent today such as (brace yourselves) letting children go out without mittens and (the horrors!) feeding them apple juice drinks instead of apple juice.  At which point, she let rip with a scathing post on exactly what she thought of these sorts of attitudes and the expectations put on mothers, citing the good-enough mother theory in support of all us imperfect mothers out here who are, in fact, raising happy, healthy, thriving children despite our imperfections,.  It was a post as well-written, as inspiring, and sadly now as non-existent, as the rest of her blog; and, as I read it, I found myself thinking that if/when I ever got round to setting up my own blog, I would call it 'Good Enough Mum' in honour of that post. Unless I thought of anything better in the meantime, that was. 

I didn't think of anything better (at least, not at the time - I thought of 'The Mummy's Curse' a couple of years later, but by then the blog was long since established under the current title), and so 'Good Enough Mum' the blog became.  It's not the most eye-catching title in the world, but it's a small memento of a fine blog that is no more and should be.  And, most importantly, it's a reminder to me not to sweat the small stuff - to get away from aiming for perfection, and focus my energies on the things that matter.

Weaned

Having settled on a breastfeeding routine compatible with my newly pump-free lifestyle (feeds before breakfast on the three mornings each week when I'm home and before bed each evening, thus adding up to a grand total of ten a week), I'd tentatively planned to continue this until around April-ish, give or take a few weeks.  The idea was that this would give Katie the extra blast of antibodies over the winter in hopes that it would be at least some protection against the many germs, while stopping at a time when she was (hopefully) too young to have formed any very strong opinions about the way morning and evening routines were expected to go, and thus not likely to be excessively troubled by the sudden absence of nursing. 

However, the evening feed was an early casualty of Jamie's toilet training.  The first few weeks were pretty intensive and hands-on, with someone needing to take him to sit on the toilet at regular intervals and to hover over him almost constantly in between those trips in order to notice as soon as possible if he wet himself and rush him straight off to the toilet again in hopes that he'd make the connection.  Trying to combine this with taking care of Katie was a constant logistical difficulty which peaked at mealtimes and bath/bedtime, the times when we had to be doing something more for her than just keeping half an eye on her with the rest on Jamie.  Her bath-and-bed routine was rapidly trimmed to the essentials, and that meant the breastfeeding went.  It was no great loss - by then, it was a pretty token feed.  I'd started her on a top-up bottle after the breastfeed back when we night weaned, and her interest in being breastfed before it had dwindled to low levels.  Neither of us were greatly troubled at stopping that one.

Since her morning feed was before Jamie woke up, I could keep that one going, and thus the breastfeed-through-the-winter goal remained potentially on the cards.  However, this did have us down to a mere three breastfeeds a week, and she was hardly getting much to speak of on that regime.  She did seem to still be getting the odd mouthful (which does supposedly mean about a squillion antibodies, if pro-breastfeeding polemics are any guide), but, as her thirteenth month progressed, I found myself revisiting the when-should-I-stop decision and reweighing the pros and cons of my original plan.

In the pros column: I still enjoyed nursing, stopping would be the end of an era and was therefore rather sad to anticipate, and there was always the possibility that the milk might be contributing at least some degree of boosting to her immune system (in all honesty, I had to admit that I didn't realistically believe that to be the case by then, but, what the heck, I could be wrong).  In the cons column, I didn't know how much longer I'd maintain any sort of supply on this level of nursing; if stopping was inevitable, I'd prefer it to be me rather than my body taking the final decision to call a halt.  More importantly, that time first thing in the morning on those three days was about the only time in which Katie had a chance for some un-Jamie-interrupted maternal attention, and, while spending that time nursing was all very nice and I supposed possibly beneficial to her, I did feel she'd reached the age where she'd get a whole lot more benefit from spending it playing together.  And, behind all those pros and cons, I simply found myself feeling increasingly strongly that the trajectory of the whole experience was taking us quite naturally to an ecclesiastically time-to-wean point, and that perhaps I should simply accept that that's where I was now.  Katie was due to turn fourteen months old on Sunday, January 25th; it seemed like a nice round age to nurse to. By about a week before that I decided I'd keep going until then, then stop.

On January 25th, Katie woke up at some godawful hour of the morning and wouldn't settle.  I eventually took her into the bathroom for some painkiller in case she was teething, and then, not wanting to have to get up again if it turned out that hunger was actually the problem, figured I might as well park her on the breast before going back to bed.  So I did.  Then, when the morning got started properly, we were rushing around enough doing other stuff (Barry's parents were staying and we were heading out to a nearby town for a shopping trip) that I just didn't get a chance to feed her again that morning.  I thought, sod it, I'm not having my last ever breastfeed be in a bathroom, and so we had a proper Last Breastfeed on the following Tuesday morning, snuggled up together in my usual armchair downstairs as we had so many times before, and I bid the whole experience a fond and nostalgic farewell (sniff) and prepared myself to do something other than breastfeeding her when we came downstairs on the Saturday morning. Then, on the Friday, she came down with a tummy bug.  Oh, what the hell - breast milk is reputed to have healing properties on the gut, there was always the off-chance that she might recover a bit more quickly if I kept breastfeeding her, I'd kept going this long, I might as well keep going for longer.  So, instead of stopping, I breastfed her for another week (whether it made a blind bit of difference to how quickly her tummy bug cleared up, I don't know).  Which took us through to the week of Friday, 6th February (not March, despite what I previously wrote and have only just noticed - apologies for error, now edited), on which date, as it happened, I had the morning off for one of Jamie's hospital appointments.  It snowed heavily most of that week and was snowing again when I came downstairs on the Friday morning; the whole scene was so beautiful and peaceful that, somehow, I couldn't resist breastfeeding just one last time.  And so we had a last Last Breastfeed, with the snow falling outside as Katie curled nursing in my lap that one last time.

By which stage, as you can probably imagine, I had something of a "Hmmm... well, let's just wait and see how it goes" reaction to the thought of finally stopping.  However, when I did get as far as the actual cessation after all that, it went perfectly smoothly.  On the Saturday morning, and on mornings thereafter, I gave Katie a drink of diluted apple juice from a cup before breakfast instead of a breastfeed, which she accepted with perfect equanimity.  For the first few mornings of doing this, I went into my study instead of the living room to give her her drink, in hopes that the unfamiliar setting would make the other change in the morning routine less obvious; after that, I just went back to sitting in the same old chair, holding her on my lap to give her her drink.  My breasts ached on and off in the weeks after stopping, the satisfying, untroubling ache of a well-used muscle relaxing into inactivity.  A couple of times Katie did seem to be eyeing them, but she never seemed troubled by their new lack of participation in the morning's events.

And that was it for both of us.  After two children, an aggregate total of two and a half years of lactation, and several gallons of milk donation, my breasts have gone into honourable retirement.  It wasn't quite the ending I'd originally planned, and I'm glad it wasn't; I'm so tired of planning parenting goals, of obsessing over whether I'm doing things Right according to some irrelevant or invented standard, of turning parenthood into a project.  This time, I let go of all the goals and went with what was right for us.  After the obsession and stress and misery of the first time around, I got exactly what I most wanted for my second and last experience of breastfeeding; a straightforward, relatively uncomplicated experience.  And now, I have the satisfaction of knowing that it's been that way from the start right through to the straightforward, uncomplicated end.

Hey, Guess Where Your Freedom To Swing Your Arm Ends? My reply to Peggy O'Mara

The other day I stumbled across this blogpost, which is basically a verbatim post of an article by Peggy O'Mara, editor of Mothering magazine (a woman with whose rhetoric I have been somewhat unimpressed since reading a well-known article of hers in which she interrupted her prolonged diatribe about what we should be doing about our babies' sleep to tell us not to listen to experts who didn't know our babies.  I'm willing to bet that, to this day, she hasn't spotted the contradiction there.)  I couldn't decide which I found more objectionable - her skewing of the facts and figures in the name of 'informing' parents, or her attitude towards freedom of choice - but, either way, I hadn't actually planned to blog about it, purely due to the so-many-blog-topics-so-little-time factor.  However, thanks to my darling husband giving me the much-treasured Mother's Day treat of an hour on my own while he takes the children to the garden centre, I actually had a chance to sit down and write comments on some of the blog posts I've been wanting to comment on; and the comment I wrote for that post got longer, and longer, until before I knew it I realised I had a whole blogpost on my hands and might as well go ahead and post it as such.  So, this is my reply to Peggy O'Mara's article 'The Assault On Freedom Of Conscience'.

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I'm all in favour of people having freedom of choice, up to a point. But the point in question is the point at which their freedom of choice impacts significantly upon the lives of others. And, despite Peggy O'Mara's ridiculous claim in her penultimate sentence, parents are *not* the only ones who have to live with the consequences of these particular choices. Their children also have to live – or die – with them.

In the case of choices about vaccines, other people are also affected. No, Peggy O'Mara, no-one is trying to claim that the vaccines are 100% effective – just that they greatly reduce a child's risk of catching a disease, if they come into contact with it. As, indeed, your own figures show. (The vast majority of children are vaccinated, so, if the total number of measles cases is split around evenly between the vaccinated and unvaccinated groups, the rate of measles must be *much* lower in the vaccinated group.) But they don't provide 100% protection (as, again, your own figures show), and some children will be unable to have them for health reasons anyway. So, if you allow measles to start circulating again by providing a pool of unvaccinated children who can pass it around, then some other children *will* be affected.

I don't know an awful lot about the US Constitution, so please stop me if I'm wrong – but I suspect that, while protecting your right to hold and to voice a minority opinion, it does not protect your right to act on that opinion willy-nilly if doing so is going to be harmful to others. If, say, your minority opinion happens to be that small children are perfectly safe being held on an adult's lap in a moving care instead of being restrained in a car seat, you can hold that belief all you like but you'll find that acting on it will bring you both public censure and legal sanction. Not because the big bad government are meanies trying to interfere with your sacred freedom of choice, but because, as the old saying has it, your freedom to choose where to swing your arm ends where someone else's nose begins.

Of course, it's necessary to draw a balance between parents' rights to make their own choices and their children's rights to be free from harm, and I certainly wouldn't want to see a world in which it was acceptable to force all parents to bring their children up exactly in line with State diktat. But freedom of choice does not exist in a vacuum - some choices *are* potentially harmful to other people, and that's not an issue we can simply sweep under the carpet. Choices carry responsibilities. Choices carry potential consequences for people apart from the person making them. We do need to find the best balance we can between allowing parents to parent unhindered, and stepping in where their ways of so doing may have major adverse impacts upon their children.  But Peggy O'Mara is simply ignoring the other half of that dilemma.  She is trying to present this issue as though the choices she discusses were purely individual ones that don't affect anyone beyond the person making them, and that is manifestly untrue.

The MMR Decision And Death Rays From Mars

The recent furore about Wakefield's original paper on MMR reminded me that one of the numerous posts I never got round to writing was the one on why I had no problem with Jamie (and, since then, Katie) getting the MMR, and why I wasn't bothered or put off by the hype about a supposed MMR-autism link. I'm going to have a shot at writing it now - or rather, writing them, since I've rapidly realised I have a choice between one very long and unwieldy post or a series of manageable ones on the topic, and have decided to opt for the latter. 

I'm hoping that at least some people who aren't regular readers of this blog will find this post by googling the topic.  For those people, here's my background and my possible biases on the issue: I'm a general practitioner in the UK.  I'm not a partner in a practice but a salaried GP, meaning that my income is not affected by whether or not my patients are vaccinated; however, it would affect the income of the practice that employs me.  One of my two children has autistic spectrum disorder; I do not believe this to have been caused by the MMR, for reasons that I hope to explain in a subsequent post.

I wanted to write this post because I know that the alleged MMR link has worried many parents, and thought it might help at least some people to hear from a mother and a GP about how and why I reached the decision to give the MMR and why I'm happy with that decision in retrospect.  It's not meant to be an exhaustive study of all the available evidence.  It's the story of the way the evidence looked to me when I was making my own decision about the vaccine, and the factors I took into account. (Obviously, some new and relevant points have come to light since then, all of which have only strengthened my belief that I made the correct decision.  I've included those as footnotes.  The main body of the text is about how I made the decision at the time.)

It is fair to say, first off, that I was quite strongly influenced by what I'd seen of the anti-vaccination movement.  Their arguments seemed so loaded with the features I'd learned to associate with poor science (their trumpeting of poor-quality research while ignoring large-scale studies that contradicted their hypotheses, their hints of conspiracy theories, the general impression that they’d made up their minds and now were out to find the data that suited them rather than finding what the data showed and making their minds up based on that) that my automatic inclination was to assume they were wrong.  The more anti-MMR hype I saw, the more I found myself feeling that if people who argued that way were against the MMR then I should probably be all for it.

However, in all fairness, I knew that wasn't really the best way to decide the issue.  Just because I didn't like the way people sounded didn't mean that I should be dismissing what they had to say out of hand, and the fact that they gave every appearance of jumping to conclusions certainly didn't mean I was entitled to do the same thing.  So I tried to look at the available evidence as fairly as I could.  As far as I could see, the story went something like this:

Back in the 1990s, a number of parents had noted that their child seemed to have developed symptoms of autism around the time that said child got the MMR immunisation, and started wondering, worrying, and sometimes drawing conclusions about a possible connection.  In 1998, a paediatrician by the name of Andrew Wakefield wrote a paper for the Lancet in which he wrote about twelve children that he'd seen in his outpatients' clinic with autism and bowel symptoms, eight of whom had allegedly developed symptoms shortly after having the MMR.  Wakefield theorised that there might be a link - according to his theory, the MMR might be causing bowel damage which then led on, secondarily, to autism.

So, the question had been raised.  However, so far all we had was a question, and it's crucial to remember that that's not the same as an answer.  Since autism primarily affects areas such as language and imaginative play which undergo noticeable spurts of development during the second year of life, that’s very often when parents first start to notice differences about their child, and since the MMR happens to be given around the beginning of the second year, purely by the law of averages there are going to be a certain number of occasions when parents notice autistic symptoms in their child around the time that the MMR was first given.  Not only that, but taking your child to a doctor's office to have a needle stuck in him is an unusual and nerve-wracking event that tends to stick in people's memories, so, if your child has autism and you're desperately wondering what could have caused it and are looking back racking your brain to think what was happening at around the time you first noticed the symptoms of autism, the fact that your child happened to have a vaccine around then is going to be something you'll remember.  It was entirely possible, therefore, that the associations that had been noticed in some children could be purely down to coincidence.^1,2  The question had been raised, and it needed an answer.

So - and this was the bit that somehow seemed to get left out of much of the media hype around the topic at the time - researchers set out to find that answer.  They looked at large-scale groups of children, looking for any correlation between the age at which children got their MMR shots and the age at which they were first noted to have symptoms of autism that might be above and beyond coincidence, or any link between the sort of bowel symptoms Wakefield had described in the children he'd studied and either autism or the MMR, or - most importantly - any difference in autism rates between children who'd had the MMR and children who hadn't.  Esther, over at Mainstream Parenting, has a good summary of the research in this area, but the important bottom line was that none of these studies showed any link.  Children were no more likely to show symptoms of autism just after their MMR than they were at any other time around that sort of age, there didn't seem to be any sort of link between autism and inflammatory bowel disease, and - most importantly - children who'd never had the MMR were just as likely to be diagnosed with autism as children who'd had it.

The only other arguments in favour of the MMR-autism link seemed to be a claim that there were unexplained rises in the rates of autism in recent years (except that no-one could even say for certain that this was the case, given that this coincided with health professionals becoming a lot more on the ball about picking up subtle symptoms of ASD that might have gone unnoticed before - it looked more as though we were just getting better at diagnosing the cases of ASD that had always been around), and that Wakefield claimed to have found measles virus in the bowel wall of some children with autism (which was supposedly linked in with his whole theory about MMR triggering bowel disorders which then led on to autism, but frankly sounded like a pretty tenuous and inconclusive link to me.  Besides, if it turned out that Wakefield was right about that and that measles virus really did put children at risk for bowel disorders, why on earth should that be an argument in favour of me leaving my children unimmunised and thus at risk of contracting the full-strength unexpurgated version of the virus that the vaccine was meant to protect against?)³

And that, as far as I could see, seemed to be evidence in and case closed.  We'd questioned whether the MMR might increase autism risks, looked into the matter, found out that it didn't, and that was that.  Since the result of the question being raised in the first place was that a lot of extra research had been done into the vaccine, I felt that - thanks, indirectly, to Wakefield and his cronies - I could feel particularly confident that it was safe to give to my children.

However.  I wanted to give the anti-vaccine arguments as open-minded a consideration as I could before rejecting them.  Besides, my experience with a health visitor who flat-out refused to accept that Jamie's near-complete failure to gain any weight in his first two months could possibly have anything to do with his uncut tongue tie had left me with a lot of sympathy for any parent who felt convinced that X had caused Y in their child yet was getting short shrift from medical professionals.  So, I played Devil's Advocate with my conclusion. This is the bit where I feel I'm skating on thin ice, because I know the risk that someone might be disingenuous enough to quote parts of what I'm going to say out of context to support an anti-vaccine argument.  I hope people will have the integrity not to do that, and to read the whole of my post and treat it as fairly as I've tried to look at the arguments with which I disagreed.

What if, I asked myself, what if there was a grain of truth in the midst of the hype, a flicker of flame in amidst all the smoke?  The thing is, no study can prove a negative - that's just a simple fact of science.  No study can ever prove that there is absolutely zero chance of any risk associated with a particular thing or action.  So, what if just a few of the parents who believed the MMR had triggered autism actually were right?  What if the risk wasn't actually non-existent, but just so small that all the studies to date had missed it?  It would, of course, have to be a pretty miniscule risk for that to be the case; but it remained a theoretical possibility.  I felt comfortable with the evidence for the MMR's safety, but I did also recognise the fact that it was not possible to absolutely completely one hundred per cent exclude any chance of any risk of the MMR causing autism.

This is what I call the 'Death Rays From Mars' argument.  The name comes from a scene I once saw on a television drama.  I have no idea what the drama was or even what most of the plot was, since I wasn't actually watching it - someone else had the TV on and I happened to be in the room.  From what I remember of it, it was a courtroom drama in which a doctor was accused of having caused the death of one of his patients through being unfit to practice.  In the scene I remember, the defence lawyer was questioning one of the witnesses, also a doctor, and asked the witness about the possibility that the patient might in fact have died from such-and-such an alternative (and highly unlikely) cause.  Was it possible, the lawyer asked the witness, that this whatever-it-was other cause might in fact have been what killed her?  The witness fixed him with a weary stare and replied "It's possible that death rays from Mars killed her."

The moral being, of course, that just because something's possible in the can't-one-hundred-per-cent-disprove-it sense doesn't mean that it's a possibility we actually have to take seriously for practical purposes.  But also that the whole 'but it's possible that...' argument can get very silly.  If we're going to worry about the possibility that something might happen even in the absence of any evidence that it will and/or the presence of positive evidence that it won't, then where do we stop? 

So, my answer to the idea that, theoretically, there might still be an infinitesmal risk of the MMR causing autism was "Compared to what?"  If you're going to start worrying about hypothetical undetectably small risks of the MMR causing autism, why stop there?  The whole point about vaccines, after all, is that they're given in order to stop a child contracting the actual diseases.  It's every bit as logical to hypothesise that infection with measles or mumps or rubella themselves might carry that risk.  It seems to me to be rather more illogical to claim that the weakened viruses in the injection are too risky to give to a child but that it's quite all right to leave that same child unprotected against the full-strength viruses that they might then catch.  At least the possibility has been thoroughly studied in the case of the MMR vaccine - I don't know of any study reassuring me that children aren't at any increased risk of developing autism as a result of catching rubella.

But I did, on the other hand, know of incontrovertible evidence of problems and risks that are associated with catching measles or mumps or rubella.  Fatalities and serious complications from measles or mumps may be rare in healthy children, but they do happen.  Rubella wasn't something that would cause Jamie himself any problems, but what if he caught the disease and passed it on to a pregnant woman?  A decision on my part not to immunise my own healthy child could indirectly have devastating lifelong consequences for another child. And, of course, if Katie wasn't immunised against rubella she ran the risk of having a severely damaged child herself - an actual, known, proved risk, unlike the theoretical in-the-face-of-all-the-evidence risk that the MMR supposedly carried.

Even an uncomplicated case of these diseases can be pretty darned unpleasant experience for the child.  My sister had measles as a child - no complications, no problems, just a straightforward case with a straightforward recovery.  Over twenty years later, I can still remember how miserable she was with that particular 'simple childhood illness'.  I didn't find it at all difficult to decide that I'd like my children to be spared that experience.

So, there you have it.  My decision wasn't based on a belief that there's absolutely no chance that the MMR could possibly have caused autism in any child ever ever ever.  It was based on a belief that, between a theoretical possibility of an MMR risk too small to show up on any studies and a theoretical possibility of a completely unstudied and unquantified autism risk with measles or mumps or rubella, on top of the actual known side-effects of those diseases, I found it a no-brainer to go for the option that had been most extensively studied and had repeatedly come up in the studies as showing no problems.  In other words, the MMR.

Coming attractions: Why I didn't want to opt for single jabs either, why I wasn't reassured by arguments about how rare these diseases are in our wonderful modern age, and why Jamie's diagnosis of ASD has in no way swayed my belief that giving the MMR was the correct decision.

...................................................................................................................................................................

Footnotes:

1. One other factor here is the possibility that, once a few people have voiced their concerns about the MMR and thus started other people wondering, this in itself can make people more likely to conclude that their child's disorder may have been caused by the MMR, and that can affect the way in which people remember and interpret events.  There is now evidence that at least some of the children who are believed by their parents to have developed autism only after the MMR actually had documented evidence of autistic features and/or of concerns about their development before having the MMR, Michelle Cedillo being the most famous such case.

2. With regard to Wakefield's paper, it has now turned out that it was indeed not a coincidence that several of the parents whose children came to see him reported their child showing symptoms of autism after the MMR.  However, the link wasn't due to the MMR having caused autism.  It was due to the fact that Wakefield had previously expressed sympathy with the belief in an MMR-autism link, and thus lawyers representing families with this belief in planned court cases against the vaccine manufacturers were deliberately advising them to go to Wakefield to get their children seen by him.  Wakefield knew this perfectly well but didn't report it in the paper he wrote, despite the fact that it would have put an important new slant on others' interpretation of the results to know that all these children hadn't shown up in one hospital's outpatient clinic through sheer random chance.  He also didn't report the payments he was receiving from the lawyers for this work, even though it's considered ethically correct for the author of a medical paper to report all conflicts of interest at the end of the paper.

3. Wakefield's laboratory experiments in this area have since been completely discredited, as it has been shown that his work was riddled with errors in technique that could have caused false positive results.  The same studies have been attempted by other researchers using correct techniques, and no-one else has found any sign of measles virus in the guts of autistic children.

Thirteen And Fourteen Months - Two For The Price Of Something-Or-Other

I meant to keep doing separate updates for each month of Katie's life, as I have been.  However, her thirteenth month passed without anything much more exciting to report than a changeover from two naps a day to one.  She did at one point shuffle one of her feet a fraction of an inch forward while standing unsupported and I got very excited and started planning a blog post complete with Neil Armstrong references, but then she didn't repeat this for the rest of the month and, really, once I thought further about it the excitement value seemed pretty limited even when viewed through the Doting Parent lens.  So, a month without anything much to blog about. Then she hit fourteen months and, suddenly, all sorts of neurones seemed to connect in her brain.  She started pointing at everything and discussing it with enormous interest in Katie language, politely but firmly expressing her opinion that those curtains should really be opened now, thank you, Mummy, or that she would like the radio back on, please, or just telling me about the really interesting thing that she could see over there in that corner of the room, all in cheerfully indecipherable syllables and gurgles.  And then she started walking and talking.  Well, I exaggerate slightly - she started taking a few wobbly steps and saying a few definite words - but it was still pretty cool, milestone-wise. 

My policy in these updates has been that while each monthly update should be restricted scrupulously to the events of the month, the whole month, and nothing but the month, any noteworthy developments between the 25th of each month and the time I actually get round to writing that monthly report up can rate a passing mention as long as I clarify that they weren't part of the events in the month under discussion.  However, the contrast between the non-event of her thirteenth month and the amount of development that seemed to be taking place by the time I was getting round to writing it up was so great that I just thought, sod it, I'll make it a two-monthly update this time.  Besides, I was even more desperately strapped for time than usual.

So.  Thirteenth month - the nap transition. For the previous couple of months, since being night weaned, Katie had been on a schedule of napping once in the late morning around 10.30 - 11-ish, and once in the early-to-mid-afternoon, for an hour or so at a time; shortly after her first birthday, she started switching over to the toddler pattern of having one nap a couple of hours long at the beginning of the afternoon, right after lunch.  The books all seem to paint this transition as a horrible time of tiredness and crankiness due to baby not being fully in either sleep pattern, but in fact Katie accomplished it perfectly smoothly - she just went back and forth unpredictably for a bit between days when she was in the old pattern and days when she was in the new (with the latter becoming more frequent over a period of a few weeks until the former had disappeared), and was perfectly happy as long as we watched her and went with what her pattern was on any given day.  So we simply watched her as she got to late morning to see whether she seemed to need a nap then or not, and arranged things accordingly.  If we'd had any sort of social life that we wanted to plan it would no doubt have been pretty awkward, but, as it was, it all went swimmingly.

Fourteenth month - the actual interesting milestones.  As above, plus brief summary of other milestones as follows:

First wobbly unsupported steps.  This was, with excellent timing, on New Year's Eve a few hours before we headed up to see Barry's parents, so they got to witness this new skill at an early stage.

First definite word (as in, something I was sure was a word and not just something that might have been either a word or a random sound that fortuitously happened to resemble the name of the thing she happened to be looking at).  This was also on New Year's Eve, and was inspired by Barry's parents' dog, which proved to be even more exciting than Christmas trees or Barry's mother's comb.  So Katie's official first word is "Dog!"

(From the Katie-at-thirteen-months dictionary: Dog (duhg): 1. Furry canine animal.  2. General expression of delight or amazement at any of the many things in life that are so awesomely wonderful as to be almost in the same category of wonderfulness as dogs are.)

Second definite word, which was "Da", as in "Daddy".  I'm clearly an also-ran as far as naming is concerned.

Other possible word sightings (hearings?): "Ted". "Key".  "Dere".  "Dat".  I'm pretty sure about "Ted".  The others are probables.

Breastfeeding status at end of fourteenth month: three times weekly.  Tooth count: nine (eight incisors, lower left molar) (vg).

And now I shall wrap this up and post it before it turns into a three-month update.

I'm too busy to tell you how busy I am

Parenting Tip #10537 - Do not, if you can avoid it, try to toilet-train an unready child on the autistic spectrum at the time that your other child is in the one-and-a-bit-years-old more-mobility-than-sense into-everything stage, particularly not if this also happens to coincide with a time when work is in its busiest season and you are also spending tiresome amounts of time sorting out the fallout of a recent car accident.

We could not, unfortunately, avoid it, or at least not if we wanted Jamie to have a reasonable stab at avoiding being the exception to that supposedly reassuring thing people say to parents struggling with toilet training about how they Never Start Big School In Nappies, After All.  So, for the past four weeks, huge amounts of our time have been taken up with trying to persuade Jamie to leave what he's doing and come and sit on the toilet, and with playing games with him or singing songs to keep him entertained while he's there (the 'Coat of Many Colours' song from Joseph's Amazing Technicolor Dreamcoat has proved particularly popular - I always knew my obsessive memorising of the entire long list of colours would find an appreciative audience some day), and with watching him like a hawk so we can notice quickly when he wets himself and send him straight to the toilet in hopes that it'll strengthen the connection in his mind, and with mopping up puddles, and with doing extra laundry.  Since huge amounts of time is something we don't actually have, this means life is, currently, reaching new dimensions of exhaustion.

I will post again.  Someday.  But I may be gone for some time.

Addenda

A quick collection of bits that either don't easily fit into another post or that I omitted to include in the post they should have fitted into:

We had the LISM (Local Inclusion Support Meeting - the get-together of relevant people to discuss how Jamie was doing and what he needed to do next).  I'd pictured this being a large group of people sitting round a conference table in some long bleak boardroom, but in fact it was just a few of us in a very nice room with a few chairs clustered round a coffee table and plenty of toys that Katie could play with (so she spent much of the meeting trying to play with people's Filofaxes and briefcases).  There were only three other people there besides us - Manda and Jane from the nursery, and Sharon, the area SENCO (Special Educational Needs Co-ordinator).  Dr M., Carol (our health visitor), and the speech therapist who's been coming in and doing sessions with Jamie at nursery once a week had all been invited but couldn't make it, although we did get long and detailed notes from the speech therapist to compensate for her absence.

We all sat around and talked about Jamie's many strong points and general wonderfulness, and discussed what things needed to happen next.  Barry and I are having another shot at toilet training him, Manda has some ideas for working on things at nursery to help him with making transitions between activities and so forth, and when we know which school he's been allocated to (which apparently we won't until February, unfortunately) we can put in an application for him to have an aide for the initial weeks of the school year to provide him with some extra support.  Sharon documented all this, including (I was pleased to hear) my heartfelt compliments and thanks to the nursery staff for the truly spectacular job they're doing with him (do you know they even offered to help with the toilet training in any way they could?  Good god, I don't even want to do the job and he's my son, yet here they are just volunteering for a share in it!)  Then we all went our separate ways to get on with the various things we'd agreed to do, which, in our case, involves putting Jamie into pants for a bit of time each day and trying to make sure that as many as possible of the resultant puddles end up vaguely aimed at the toilet.  (We are making progress, although in a terribly slow way.)

Katie is still breastfeeding twice daily (on days when I'm at home - on my work days, I leave before she wakes up in the morning, so obviously she only gets the evening breastfeed on those days).  I'd assumed I'd have to drop the morning breastfeed when I was no longer pumping, but it seems the production system does have that much leeway in it and I have been able to keep up the twice-daily breastfeed.  She can pretty much take or leave these and I think that if I went to "don't offer, don't refuse" now, she'd be weaned within a day or so with no looking back.  I have in fact given some serious thought to whether I should do it that way and thus make the final weaning easy, but, well, antibodies, winter coming, all that, not to mention that I still like doing it.  So, I'm still sticking with the original plan of keeping going until either she gets bored with it or spring comes, whichever happens first.

Finally, because I like recording such things, here's the list of milestones Katie's card from the health visitor tells us children should have reached by the end of one year (all nicely achieved in her case, I'm pleased to say):

• Standing, crawling, and sitting to play
• Finger feeding/enjoying a wide range of foods
• Drinking from a cup/feeder cup
• Making lots of babbly noises and saying 'Dada, Mama, Baba'
• Waving and clapping hands
• Enjoying books (I assume that last one covers 'enjoying pulling them off the shelves and trying to eat them'.)