Ramping It Up: Children w disabilities, opinions, books

Lunches, Disability Insurance Schemes and (of course) Deadlines

I was called "dear" by a young doctor at the Children's Hospital yesterday ("What was your name again, dear?") and it was all I could do not to hiss at her. Of course, hissing "Don't patronise me, Girlie" would defeat the purpose, and I even pondered mentioning it to her colleague on the phone this morning (do you reckon you could ask your intern . . .) but decided against it. It's like the no-brains-at-all-apprentice where I get my hair cut, who calls me Dear and Doll. I think he's eleven. It irritates me - shits me to tears - but there's no point "making a federal case" of it, as it were. (Being Australian, methinks the line, "There's no point taking it to the High Court" won't ever really slip into popular culture the way that particular Americanism has.)

So, was at the Children's Hospital yesterday with Clancy for a change, in the interests of MCAD. He was sick, had a temperature, and was refusing to eat. With any other kid, you'd give them lots of water, and it'd be fine. But no, potential (but not actual) dramas at every turn. Heightened by a bit of strategic and v loud dustbusting by Abe while I was having the obligatory phone confab with the hospital (yep, that's domesticity for ya). So had to spend a few hours in Emergency while they decided whether an IV drip or a naso-gastric tube was going to be needed, and instead we've added yet another potion/ tin/ kg of stuff to carry with us: "PolyJoule", like water, but with calories and no taste.

And joy oh joy, I got to meet the patronising young doctor.

But enough, that's boring. Also headed out on Sunday to do some "disabonding", to meet up with a bunch of women who also have small children with disabilities. I've been invited along so many times it was becoming Bad Form not to go. Ambivalent? Oh yes. The old club you never intended to join thing. And of course of course, it was terrific and interesting and sobering all at once. A woman whose child has a very rare disorder (less than 20 incidences in the whole of Australia), and who spoke blithely of weekly treatments, portacaths, surgery, and bits of cartilege where bone should be. Her daughter had to wear a metal "halo" for a year, but can now hold her head up, speak and even (very recently) walk. Another two whose children both have rare disorders, involving limited movement, twisted limbs, and endless hospital visits. One told the story of her son's birth, which was so traumatic you could see her distress and a certain amount of steel even as she spoke of it. The woman next to her combined matter-of-fact descriptions of major surgery with any number of little stories revealing what a strong-willed character her daughter is, hurling toys and dolls out of her bed, as no-one but no-one takes space or attention away from her own little self. Another whose daughter had a week where she spoke a few words, but has not managed it since. The final woman had a son with ASD, and seemed a little over-awed by the stories of physical disability, and didn't quite know where to place herself.

And in case that sounds too serious for words: pinot gris; crispy barramundi on a lemony risotto; and a desert that added about 3 kg just by the end of lunch. (I know about healthy weight ranges, and at least 8 kg are supposed to go by Christmas, in the interests of living a long, happy and healthy life with better frocks. I believe a stronger strength of will is required.)

Nobody was whinging in this group, I'd have to say, but there were once again stories about equipment, and organisation, and medical procedures, and practicality - with the sort of wicked laughter you can most easily share with others in the same predicament. So of course I had all that in mind when hearing Rhonda Galbally talking about the National Disability Insurance Scheme on RN. I'd been hearing about the scheme itself for a while, but what's new is the research, and a report on the experience of families with disabilities in Australia. I haven't read it all  yet, and yes it's sobering.

The thing I can't quite get my head around, and which Galbally mentioned, was the problem with education and the way in which both mainstream and special schools are failing those who need them. I've heard and read many critiques from people who've been shunted into special schools and ran away screaming (And I know there's at least one PhD underway on that right now), but these are from people who academically went gang-busters and for whom mainstream schooling worked very well. What I'm not clear on is why, if special schools are part of the regular, public schooling system, they're not just as accountable as every other part of the education system. Because while I do appreciate the notions of inclusion, it's not clear to me whether that will work for Miz M, given her high level of physical needs (although I know these should be dealt with in a regular school, with the right level of support), and given the likelihood she won't be able to speak, and even the likelihood (although I think the jury's still out on this) that she also has an intellectual disability. Shouldn't the Special Schools be just as good, if not better, at making sure these kids get a good education, that does open them up intellectually and creatively, that isn't about sticking them in either physical or metaphoric beanbags in the corner? It must not must not be a fait accompli that these schools are below par. And the deputy principal at the school I've spoken to, seemed pretty clear on why meaningful pedagogical outcomes are possible, but I gather there are no properly thoguht through curricula for special schools. Not good enough, comrades, so I wonder who I appraoch about that, and whether I should start with Miz Galbally herself and ask her what she thinks?

Although there's clearly lobbying around the actual National Disability insurance Scheme, too. 

Meanwhile, though, there's the question of how we all cope, stay together, stay positive, or - depending on how you look at it - don't fall apart. And I've recently glanced at a new report on resilience and families of children with disabilities, but have not had a chance to absorb it or respond to it. Some people are sick of the word "resilience", and have been Ann Deveson'd out, maybe, but as a concept, I still get it. At least, get why it matters. I've never thought the bounce-back-ability definition was quite nuanced enough though, so maybe it's time for a new catchphrase. But they go in and out of fashion, don't they. ("Not Happy, Jan" - a response to any moment of being patronised, ignored, irritated. Where would we be without it.)

Meanwhile, I know I'd be more positive and bouncier than an india-rubber ball (as King John said, in an A A Milne poem) if I was able to do some decent, sweaty, muscle-burning, cardio exercise. And if I could deal with my cheese addiction.

Hmmmmmm: insert literary and cheesy segue, connecting dairy to court of Henry Vlll and the fabulously interesting Thomas Cromwell. OK, if we take it as a given that I've done that successfully: So, Hilary Mantel won the Booker! I really enjoyed reading this brick-sized book, but haven't as yet read anything else on the short list. (Love A S Byatt's Possession, but wasn't wild about any others, which makes me nervous of the Children's Book; against all odds have not converted to Coatzee, but really should give that a go; like Sarah Waters, but this one doesn't sound as successful; which means I have the one about the 1840s asylum, and the one about Czechoslavakia in my sights . . .)

Time to head off without hissing at anyone, and to see if I can manage the rest of the week without being called "Dear". I'm not quite at the feirce "I"m not your dear-anything" phrase, which I have a feeling my mum used to occasionally use, in her flea-in-your-ear moments, but am prepared to build up to it. I used to know a woman at uni whose dog was called "Girlie", which was short for "Don't Call me Girlie".

So, Don't Call me Girlie, m'dear.

PS Adelaide, thanks for your comments. Yes, there are great pieces of equipment out there, just not at every park. There are even great swings with enough head support etc, but our v small courtyard really is small, even for Australia. No grass, no room to swing a cat. And no, slings don't work for her, as no head control means she doesn't have the strength to be supported in them (and I carry Clancy on my back while she's in her mobility thingo). There are great chairs and seats out there, a no of which we have - and allow for good interactions at home or at childcare etc. I"m probably being unrealistic in wanting something easy and portable.

Feeling Annoyingly Tired

So, what's a girl to do? Try to write herself out of feeling as though she's been run over by a truck, that's what. And there's no excuse: Clancy's MCAD has now reached the stage where he can go 7 hours without being fed, and he charmingly woke up with a squeek with only 4 minutes to go on the alarm, so I slept for 7 hours. Other parents of 7 month-olds should be shrieking at me right about now.

And as this is my one and only chance of the week to do something productive, I really can't afford to piss about. I need to think myself into analytic and self-critical mode, with a touch of bravado, as I have to put together a proper "skills-based CV" in order to see what other options there might be for me in the organisation when I return to work. Perhaps I should call it The Organisation with capital letters and make it sound both ominous and Soviet at the same time? No, perhaps not. There are also still applications for funding to be completed, to deal with the endless round of Morgaine-shaped equipment she needs. Still, she does seem to enjoy being in her stander. (Although various people I know - especially those I'm related to - keep wanting to call it a Walker, and I have to shatter their illusions and say no, she won't be walking. Really. I'm not making it up or being a drama queen here.)

Abe and I went off to the Mt Coot-tha Botanic Gardens yesterday, with Clancy and Morgaine of course, and walked serpentine routes through various lovely landscapes. One minute in a rainforest section, then turn a corner and go up a steep bit, and there are mountainous cold-weather trees. Lush and green here; spiky and architectural there. And ducks, moor hens, ibises and sulphur-crested cockatoos everywhere. Clancy, for the first time, really saw the ducks. He didn't know whether to be thrilled or scared, but he did know he was both fascinated and ASTONISHED. At 7 months, the world is unfolding before his eyes - and it is, of course, his own personal set of origami paper (or does the unfolding really refer to one of those large scale maps, with pop-up bits and dragons off to the side?). This was funny and cute and endearing, as well as seeing the cognitive development right before your eyes.

And then I couldn't help but be a bit wistful, because M was oblivious to all of this. It's not that she's oblivious to the world. She sees and knows us, she's interested in things. But there's such a limit to what she engages with. I don't know how much this is merely physical, and how much developmental. In my darkest moments I worry that she might not even really know us, but that rather she's responding to people who are good to her, who are warm and affectionate and loving. Whoever they may be. And than and then and then. I don't want to underestimate her skills, her perception, her intelligence or her possibilities. Which is why I know I'll always fight for her; why I'll always do whatever I can; and why I'll feel guilty every day at not doing more.

But thinking of doing more, I heard an interview on Radio National breakfast last week, with a neurologist talking about the plasticity of the brain. Norman Doige, The Brain that Changed Itself. I'm often wary of writers like this, especially with the increasingly popular use of biologically determinant ways of thinking. And it's not just because of Morgaine that they irritate me: as a feminist, I've always thought that was a bit dodgy. (And, yes there are some serious implications for race in that critique too. ) But where I thought this guys was interesting, was that he talked about how the scientific understanding of the brain and its development has shifted fundamentally from when (eg) he was first trained; and he also allowed a role of culture and context (hallelujah!) and talked about a woman with disabilities who "trained" her brain to do things she couldn't previously do. So I reckon I should get that one, have a read, and see what I think. I've been selective in what I've read in this area, to minimise my frustration in not knowing what the hell is going on with M, except for the very general "some type of brain mis-development" angle. Although I do have a copy of neuroscientist Lise Eliot's What's Going on in There, which is interesting although not necessarily directly helpful.

That reminds me: we still haven't had any results from M's MRI scan, which was ages ago now. Add that to list: contact hospital, hustle, try to get appointment.

The hustle. Yep, that's it, am ready to hustle.

Time, Lists, Hair and Sign Language

Oh dear, it's been too long. Surely, like sex, twice a week for blogging isn't too much to ask even if, with both, daily would be better? And clearly I have too many thoughts in my head, and not enough coffee, because so far each sentence has too many commas, too many clauses, not enough clarity and bugger all wit.

But perhaps that's because I'm feeling untethered; as though my forehead is floating ten centimetres above my head. You see, I just dropped Clancy off for his first day at childcare, and it feels odd odd odd. I wasn't ready for it to happen for a few months, but at the same time I was becoming increasingly anxious that I'd be back at work with no childcare organised. So when the director of the centre said hey, we can get him in for one day a week, I had to say yes. And then, here we go, the Disclosure question again, I had to explain MCAD to them while trying not to freak everyone out. Of course, it's not at all as confronting as explaining M's disability, but it's about treading the fine line between asking them to take it seriously, and insisting that really it's all going to be fine and they don't need to be too anxious or fearful.

But I left him there after ten minutes of him beaming at everyone, playing with a stuffed frog, leaning on one elbow on some cushions, and then falling asleep with that look of utter abandon children do so well, with arms flung over head. Then I turned around to see that Morgaine had a scratch down her chin that was gratifying in showing that she's a part of the regular gang, given a swipe by the pipsqueak kid with big hair. And while it's true she can't really defend herself, I'd rather that than her being left in a "safe" corner somewhere. Because my image of horror has become the beanbag: where the "immobiles" are left to moulder. (A rather tactless friend described in detail to me - more than once - how this is what can happen to children with disabilities in institutions. She specialises in statements like this: not in a malevolent way, but often in a way that feels a tad combative. She also said one day, "well, you'll be changing nappies for a long time". Goshdarnit, I'd nevah thoughta that. So anyway, I realised recently that The Beanbag sits inside my head, in its lumpy way, as visual shorthand for institutional neglect. So retro chic belongs to particular decades, for me!)

But hey, it's not all looming symbolism. No, not at all. Had an interesting experience of the black humour of other parents of children with disabilities last week. Still doing the Hanen Method course for children with "delayed" language. My sweet M is clearly the most delayed of the group, not even at the pointing and consistent ("intentional") gestural stage. There are five of us doing the course, but for various reasons there were only three of us there last week, with the two Speechies. Although the course is good, some of it is too much like a comprehension exercise, that's frustrating for those of us used to absorbing and assimilating a lot of information rather quickly, so to my relief the woman leading the course last week was more lateral than the other. She asked us to extrapolate modes of language use from particular scenarios, breaking it down. But she wasn't expecting the extent to which our own circumstances transformed supposed "everyday" experiences into (what?) obstacles. And we'd reached that stage where a collection of people becomes a group with its own grammar and humour and knowledge of each other.

So imagine, she said, that you've gone out to a cafe or restaurant, and your child picks up their bowl of food and throws it into the face of a stranger. How would you feel?

Me: Well, I'd be delighted that she'd ever have the strength to do that!

Comrade 1: I'd be thrilled that he could eat anything at all not made by me and that won't cause a fatal reaction!

Comrade 2: Given that he's fed by a naso-gastric tube, I'd just love it if he could eat normally!

Hmmmm, so we had to behave and admit that if we had a Normal Child we might respond by X, Y or Z. In other words, there was a rather lot of smart-arsery, which can be a relief after the potential for angst and earnestness in these situations. And of course it can be fun to be a bit naughty. But the profound difference between dealing with disability and dealing with "the rest" reminds me of the Ian Dury line about the Walkie Talkies, as his way to distinguish the "regular" world from those proudly Other, like him. The young woman who comes to do some Respite Care with M refers to those who are "Mainstream". (Mind you, she also talks about "disability children" rather than "disabled children" or "children with a disability", so am not sure what I can conclude about the language of this world. And I still think it's funny that she couldn't bring herself to tell me that her 4 am return from a party happened at a "Godless hour". She called it a "goshless hour". I am soooooo not used to people who are conventionally religious. Or in fact as conservative as she is. Twenty years old, and she asked me rather guilelessly - quizzed me, rather - why Abe and I weren't married; whether or not I went to church; if we'd ever get married. She'd never encountered such a thing. So apart from mumbling a few "Feminism 101" responses, and thinking You Really Do Need to Get Out More, it left me pondering just what Respite is "Respite From"? I have to be very careful that I don't find myself locked into spending too much time with other people in this particular world.)

But back to the Hanen Method course. I also wondered about introducing Makaton Signing to Morgaine, as a way to incorporate it into our household use of words and language. It's a system that recognises that "real" sign language is a full system of language; and instead is specifically for those children who are language delayed but who may, hopefully, one day develop spoken language. Key words in a sentence are signed, and only those. I figure that Clancy will speak early (he's showing all indicators), and may as well learn the signs too. The problem, of course, is whether and how much M gets any of the regular gestures, given that waving, pointing and so on are currently beyond her. She does move her arms to indicate pleasure and desire, to show she wants more . . .

Oh blah blah blah.

I need rather more focus and point to it all here.

I think I'm using this blither in order to get my mind in order for the huge no of things I want to get done today: submission to the Therapy Place about the structure of their board, and asking for response to the fact there's no person with a disability on the board, as well as no parent/ carer; submission to the childcare centre about physical access, health and safety and (really) equity; finalise funding application; response to council and local state member about general access in area (crap), and more specifically about new park proposal that doesn't seem to have any principals of disabled access incorporated at all. And so on. Oh yeah, and overdue tax returns. And a million other things. and medical appointments for M and whether she is eligible for a special bed as she has a neuromuscular condition. Phonecalls. Research. Hassling. Hustling. The enduring and ongoing need tobe an Advocate and an Educator, to have more and more Capitalisation in my life.

Whereas it'd be fun to think through writing on memory and madness and pain (I reckon I held my breath through the last three chapters of Sebastian Barry's Secret Scripture); or on hairdressers and camp (a young woman - a teenager - was getting her hair Done with a capital D in the seat next to me on Saturday. Hot rollers and loops of hair pinned up. The hairdresser made some comment about how he loved doing such Glamorous Dos, he used to do it all the time. At another salon, she asked? No, when I was a drag queen, he said. And surely the pisstake opportunities of this truly hideous, OTT, bonkers hair was there for all to see? I would've laughed if I hadn't been gagging on hairspray.

I did some historical research once on hair and its cultural meaning, and read the little magazines of the barbers' unions in Australia in the 1920s. Some great stuff on the shingle and the bob, as well as details of what they'd do before then. Women's long hair, plaited in place, with stray hairs singed out of the way for a smooth look. Whereas the "male" techniques of bobbing and shingling were seen initially as radical, liberating, lightening, setting free the weight of convention and revealing the neck. But the biggest mystery, it seems to me, is the weirdness of bridal hair and "formal" hair, which is lost in its own mad mad mad conventions of ringlets and rolls and sweeps, sprays of flowers and times long long gone.

Snip snip snip; snipe snipe. Time to go, really.

Feeling a Bit Wallaby

Like many women, I have a tendency to apologise for my emotions. And like many over-achieving, educated, careery, what-me-a-perfectionist? women, I want to rationalise everything in a positive, resilient, manner. So after my friend Dezi called one day, and got me right in the midst of one of those moments when a kind, compassionate, friend's voice tips you over the edge, she copped the lot. Why some things were tough; why I worried about my girl; that I ever so slightly felt like bursting into tears; why not having the time to do anything at all was driving me a bit spare. And so on.

Then, of course, the next day I apologised for it all. For feeling a bit wobbly. Or for feeling, in that Orrrr-strayan way, a bit "wobberly".

"Don't worry," she said, in a delightfully tongue-twister way, "You can feel as wallaby as you like with me."

Of course, given that I had Clancy on my chest as we spoke, and had spent the day carting him around in a front pack, a wallaby was just the thing. And given that the crazy genetics and mutations and god knows what that aboung with Abe and I, any other baby could well be - well - a wallaby indeed. Or a giraffe.

So we had one hell of a conversation about what it means to be feeling a Bit Wallaby.

I wrote a spiel to the Childcare Centre, for use in a possible newsletter, explaining Morgaine's disability. And as chipper, positive, and proactive as that undoubtedly is, it can certainly make you a tad wallaby. And realising that my life has become increasingly pre-first-draft can do it, too. Not just this very very occasional blog, but at the moment everything I do, in fits and starts and with completely compromised time and attention, why, I wouldn't even say it was "first draft" standard. No time to polish, think deeper, clarify or - something I need more and more - edit and delete and get rid of the sloppy, imprecise, wafting crapola. And then, in a fit of frazzled energy, I sent off the childcare spiel without checking it in with Abe, which was bad behaviour on my part.**

And again, to indulge in self-centredness, watching the Black Balloon left me exposed and feeling raw. Which is curious. Because I'm a reader. And a classic distracted user of much visual media: I can read the paper and have a conversation and speak on the phone and breastfeed Clancy and play with Morgaine, while watching the TV and flipping channels at the same time. I can keep track of 3 different soapies I don't even watch, just be absorbing the promos. Can flip between two reality tv programs in the same genre at the same time, and see it as a postmodern interplay between versions of cross-cultural competitiveness; and can ignore both the tennis and cricket with the best of them. But a good film can hit me with the impact of its narrative in a more absorbing way than a book does. I can lose my sense of self and imagination and creativity and intellect inside a book, and do it all the time, but a film does the emotional clouting over the head in an immersive way. I can still remember being left reeling after first seeing The Piano, and walking up William Street towards the Cross with three friends, thankful they didn't feel like chatting. Remember the surge of adrenalin after Terminator 2 (in case it all sounds too high-falutin'). And so on. SO there must be something about the power of the visual and its emotional impact that takes me outside of my wordy wordy world.

And then there's the world. Blogs, we keep being told, are the last refuge of the self-centred. A big call. Or, they're just diaries. And so many historical readings of diaries, especially women's diaries (and this woman's work is pretty interesting) and other writing, claim a completley personal and private world, that supposedly doesn't engage with the world away from the hearth. Time and again, they say that diarists weren't interested in the outside world, because they didn't mention the Napoleonic Wars or the Chartists, the Tariff debates or the latest referendum. But I don't buy it. Do we have to be explicit about it in order to show its impact? I realised since I've been blurting on here, for not so many months, that I haven't talked about federal politics and the Global Financial Crisis; haven't shared my amusement at the naughty machinations of the Labor Right in NSW; have not spelt out despair about Israel and Palestine and awfulness of Gaza; didn't chart my reactions to Barack Obama and his speeches. And this week, couldn't bear to chart the sheer horror of the four year old tossed off a bridge in Melbourne. And that last one, oh, where can you start? From tragedy to mysogyny to plain old sadness.

All of that to leave you feeling more tender and exposed. Even the pleasure of a "blog butterfly" from Pen left me a bit tender this week. And logistics started to crowd me out. A twelve week and an eight week therapy course.

Ah yes, and time. Abe has to do some work, and there's a deadline looming, so that's another tiny window that's just disappeared. Better go.

First draft, see. Not even a proper first draft.

** And this is what I sent:

And if they ask you why she can’t walk . . . ?

 

Amidst all the other children running, playing, sitting and crawling in the corridor and playground at The Centre, you might have seen one small girl in an orange-and-grey “pram”. You might have wondered why she was there, when all other prams are slotted awkwardly at the door or are otherwise kept out of the way. Well, Morgaine’s pram is not really a pram: it’s a modified seating system and mobility device; in effect an early wheelchair.

 

We thought it might be useful to introduce her to you, and perhaps to give you an opportunity to talk to your kids about disability and difference, special needs and why prams/wheelchairs can be bit of a pain at times. It also helps us deal with how she interacts with the whole community of The Centre; and is a shortcut to addressing questions of access and high needs etc.

 

Morgaine has a disability that doesn’t have a name or cause or diagnosis. It’s some sort of rare neurological condition (a brain misdevelopment) that’s neither degenerative nor catching! She can’t sit or crawl – so it’s highly unlikely she’ll ever walk. At this stage (2 yrs old at the end of March) she can’t talk either, or wave, which is also partly a function of her low strength and low tone. But rather than define her by what she can’t do, we should say that she’s also a happy, communicative, sociable girl, who loves banana and yoghurt, being held upside down and – if given half a chance – will pull your hair just to see what happens. She has a 3 month old baby brother, who she thinks is hilarious.

 

Her special needs do require some extra time and support, and so a government organisation called the “Inclusion Support Agency” provides some extra equipment and additional staff to facilitate her interaction with other children. Her therapists also provide advice to the staff, and are from the NGO “Montrose Access” – which used to be called the “Society for Crippled Children” (yep, we’re pleased they changed the name too).

 

When she’s older, she’ll graduate to an electric wheelchair, but until she’s about 4 she’ll still be rolling around in her increasingly grotty and sand-covered chariot. She already has a great time with the other children in her room, but unless there’s a managed interaction, she’ll never be able to run up to your kid and say hello. Instead, she’ll greet them with her eyes and a look, and would love it if they came to talk to her.

 

And if they ask you why she’s in a chair, why she can’t walk, what will you say?

 

This could be a great opportunity for you to have those conversations with your kids (or us). Of course, if you’d rather talk to us about something else, feel free just to say g’day anytime.

3.30 am staring at the ceiling

It's ridiculous to be unable to sleep, when there's a 10 week old boy who's just been fed - lying on my side in bed with milk dripping from my other breast and puddling into my cleavage - and who I've managed to plonk back into his little bassinette beside the bed. Then, I have to set two different alarms to make sure he doesn't sleep more than 4 hours (due to previously discussed metabolic condition) and in theory go back to sleep. Instead, I can hear that Morgaine is awake and singing away to herself, so need to check she hasn't cheerfully got her foot caught in side rails etc. Decide to give her a bottle. And in between these two things, while awake and feeding boyo, I start thinking about the fact today's M's first day back at childcare.

She's moving up into another room (ah, the heirarchy of progression; "you're not a baby anymore, m'dear, you're a toddler!" but you can't and won't ever toddle, oh well). I'm ever so slightly anxious she won't get the lovely attention she got last year, but shouldn't be. There will be extra support, too, via the Inclusion Support Agency.

But i'm slightly haunted by the Christmas Party, and how excluded she - and we - were from that. As well as the sidelong looks (why have they brought in their berloody stroller?). And the barrier provided by that chariot when it came to things like the African drumming and the demented looking Santa. And on a more positive level, my eldest sister (who's very good at these things) gave Clancy a soft toy monkey with a "don't dis my ability" wrist band around its neck. One of my other siblings said, "but that's for Clancy, not Morgaine?" And she pointed out that he'd probably be an advocate etc. Got me thinking. Here was an opportunity for the childcare centre to do its own "disability awareness" stuff and for us to "out" the issues for Morgaine. Probably should hav thought of it earlier. I'm not sure how Abe's strong sense of privacy will go with this, but on the other hand he's not at all afraid of telling people about what's going on with her. And a certain amount of questions and scrutiny goes with the territory. And surveillance.

So I"ve sent off a middle-of-the-night email to the director of the centre, and copied it to the social worker at the Therapy Place. I've decided I like her and should talk to her more.

I hope I don't regret this in the morning:

"Dear Director Groover (I didn't really call her that),

As you know, Morgainestarts back at childcare this morning, along with all the other children. Thank you, we’re looking forward to it and know how much she enjoys her time there.

I realised, though, that I don’t know whether there are other children with disabilities at the centre (and if there are it would probably be useful to meet them), and so have been thinking about whether there are any other strategies we should think about re integrating M into the wider community at the centre. It struck me, for example, at the Christmas party at the end of the year that there are some extra challenges for her with the kids (and parents) who don’t know her and don’t know why she’s apparently the only one in a “stroller” – although the children who do know and interact with her directly are very good at interacting with her, coming up to say hello etc. We’re v keen that she be part of that wider community.

It also struck me that her presence might be useful for other parents in discussing disability and difference etc with their children. At the same time, I know that having a high-needs child in an institution sometimes raises questions for other parents about resources and equity etc – partly addressed by the Inclusion Support Agency and the terrific support from The Therapy Place [or maybe I should start identifying it properly? and why am I clinging to anonymity and pseudonyms?] but, again, this happens behind the scenes. There are also, of course, ongoing issues of physical access, being addressed in the longer term by the Centre, and meaning that we get access via the side gate and through the kitchen.

I was wondering then – depending on how this fits with your and the Centre's philosophy on this - whether it would be appropriate, for example, to include a brief “introduction” of Morgaine and her needs via the newsletter or something similar. I’d be happy to write something for that or provide info. Because it struck me that in terms of visibility etc, M and her orange “chariot” would be more visible in the playground as she moves “up” into her new room this year.

(For example perhaps it’d be worth pointing out that she: has a physical disability and is unable to sit unaided or walk etc; is unable to move to your children and socialise with them, but is in fact a social happy child who loves interaction, if y our kids come to speak to her; that the “stroller” you  might see in the playground is in fact an elaborate seating system and mobility device; and when she’s older she’ll graduate to an electronic wheelchair; that extra support for her is provided for part of each day by govt funding specifically aimed at social integration. And that we don’t have a name or diagnosis for her condition, but it’s not catching, is not degenerative, she’s unlikely to ever walk [etc], and so kids can know everyone’s different.)

Of course, we take your guidance on how best to do this. (And it’s 3.30 am and I thought I’d write an email rather than just lie awake and think about it!)."

So, there you go.

I also wrote one to the coordinator of the MyTime group I'm supposed to go to, saying I can't get to the new time. Which I was told was organised around the schedule of other parents - which given that the last 3 sessions I went to, meant only three of us, but as I'd just had a baby didn't get to the last one, and I wans't asked about my schedule, I'm a tad peeved about! Also, the website suggests some actual thought and planning is supposed to go into the sessions, rather than general chitchat, so I"ve added some evil and passive-aggressive questions about that to my email to her. (Fuck it, I was irritated by her supposed "consultation"):

" Morgaine is in childcare Mon, Tues and Wednesday, so we won’t be able to make it to the meetings, which is unfortunate as more and more I realize that there are things to discuss with other parents, and questions I’d like to ask (How do they approach “labeling” their child or not, and telling other people about their child’s condition? What resources do they find the most helpful? Do they access the Respite Carers’ Centre and what was the experience like? Best accessible holidays? Places to stay and bushwalks etc that work with wheelchairs? And so on.)

I may be able to come along to some meetings, but I’ll have to approach that carefully – the Centre gets funding for an extra support worker for M for some of the time, and I don’t want to jeopardize that by not being there when they have the resources for it. So given that, perhaps there are particular weeks I should think about? I got the sense from the MyTime website that there’s a putative agenda for meetings, and resources and info etc, so are there particular issues or info etc arranged for particular weeks?

Otherwise, does MyTime do online support groups or message boards etc?"

We shall see.

Bugger bugger and bugger. Should have reread and edited and got rid of the poor phrasing, repetition, and oh, I don't know, repetition. (Did anyone say "inclusion" again?) Oh well, it's now ten past 4. Less than 2 hours before I have to feed Clancy again. M has gone back to sleep, and so should I.

Being Scatty and/or Being Disciplined

I'm not a fan of feeling scatty or distracted or half done - as I have a history of being a person who gets things done, fulfils cliches of "multi-tasking", has a habit of being an over-achiever, and gets the details right. So I know I'll need new ways of doing things in this brave new holy-shit-I-have-two-children-now world. This means grabbing opportunities when I can. Like now. Clancy asleep on Abe's chest; Morgaine dressed and washed and playing on the floor; only about 82 un-answered emails. A huge list of things to do. Half-written notes everywhere. Piles O crap on floor of loungeroom. Keen to get to an exhibition today; want to get outside and get some exercise; would love to finish making the fabled "little room" sensory play area; wonder about what still needs to be done for Christmas; would rather like to soak some  more fruit in brandy for a Christmas cake; need to work out Skype; damn, what about doing my tax; oh yes, and even had a conversation last night about turning bits of PhD into articles or book. Yeah, right. Perhaps I should just add "remember to floss" at top of list, and see if I can get through a week of doing that.

Yesterday I read an article about Toni Morrison (no no no, am not even dreaming of comparing myself to her), where as a single mother, working as an editor at Random House, she awoke at 4.30 each day to write. Now, that's what a person needs to do. And although there are myriad things I can't get done at the moment, which drives me slightly demented, I can at least read. The one thing I do have going for me is enforced time sitting on a lounge with a small boy in my lap, breastfeeding. From there, I get to survey the room and see bits of spilt milk, sprays of breasstmilk turning to cheese, toys, books, magazines, and huge piles of expectations, deadlines, obligations, guilt, activities, pleasure, magazines, reviews, relationships, love and every other damn thing, spilling over ontop of each other. So anyway, I can see all that and balance a book in the other hand: so am finally rereading Toni Morrison's Beloved, which I've long had on my list of "best books of all time", but have never actually re-read. Too blown away by that first experience, many many years ago. Living in Annandale, in Sydney, in a share house. It was winter, because I remember being almost frozen into position, lying on the floor, transfixed by this story of slavery and violence and grief and anger and joy. And I remember a details of the burnt bottom of bread, and a gravestone, and a tiny throat being cut. So heartbreaking and beautiful and poetic and political, all at once. So I hope I like it still. I remember being fearful of rereading Marquez's Hundred Years of Solitude for similar reasons: such an intense reading experience, what if I didn't get it the second time around?

And finally read Helen Garner's Joe Cinque's Consolation, after avoiding her for a number of years. I used to love her fiction, then moved away at about the time of The First Stone, then finally read this one. I could hardly put it down. A story of grief and mourning and memory and justice. One friend saw it as a story of competing types of feminism, which I didn't (Anu Singh as a feminist? nope); but the grief caem screaming through.

But maybe that's about the way in which I'm feeling haunted by death and its promises at the moment.

I'm not as destroyed or cowed by it as I have been in the past - after Dad died, after my sister died, after Mum died - so instead it's been more integrated, more about mourning and memory and aftermath.

Although at the same time, these experiences with Morgaine and now Clancy, are heightened because of the dog's head presence of death in the room. When M was so small and we thought she wouldn't live past two - that changed everything. It made every bit of time since then, when we got the reprieve, it has made it all bearable and hopeful and full of the sharp vivid taste of life and potential and hope. And now this, with Clancy's metabolic condition - MCAD. It means he's a perfectly fine happy healthy normal baby, until and unless something goes wrong, and he's not. (Tragically, there are many stories of these deaths online, and they're thre strategically: to make a case, eg in the US, for universal neonatal testing. In Australia, all babies are tested for this and about 30 other conditions; in the US, that's not the case, so parents are lobbying.) So something can't go wrong. It can't. We can't let it. But just as everyone knows how to creep in and check the sweet puffs of a baby's breath sometimes, we have that heightened awareness. The "forever vigilant" part of our lives that has to become unwavering second nature, unti lhe's old enough to make it part of his own second nature, and his own decisions about risk. Damn, risk, that's going to be a lesson in parental self-control - how not to be a nagging nightmare. Meanwhile, I can never forget my watch. I can never ignore a little alarm that goes off and tells me to feed him. Can never think, oh, yeah, he'll be fine don't worry about it. Hospitals and emergency departments and specialists and drips and consultations and rattling off the acronyms and diagnoses and genetic implications. When not 5 weeks ago we didn't know any of this.

Clancy was born five weeks ago today. And in the first 4 days before the heel prick test came back, other babies in the same circumstances have died. Impossible impossible impossible.

All of this points to our decision for the day: time to head off to see a new contemporary art exhibition, "Optimism". Not blind optimism; not naive optimism; just optimism.