Ramping It Up: Children w disabilities, opinions, books

Hormones, uncertainty, work and friends

Blogging is like exercise - you stop, and then it's hard to get back into it properly. The intoxicating smell of sweat just smells like sweat. Can't find the hand-wraps. Don't want to write a whinge-post. It's too hot to get the heart rate up. Your observations seem lame. Every time you put on the t-shirt and cotton pants, a child wakes up and needs something. And. So. Boringly. On.

And like the warm-up stretches, the burn-out kicks and combinations you need to get started kickboxing, the blog begins with a warm-up series of apologies, excuses, guilt, and a quick one-two to your own head. Ah, the sporting analogy: I shoulda been a politician. Erk, no, the old "fit for office" crap of Howard-the-daily-walker, Abbott-in-his-cossies, Turnbull-skipping-with-his-wit or Rudd-stretching-his-piousness-to-the-limit makes me want to gag. Although the way they're all turning to religion is getting up my nose even more. Sure, watching the sectarian politics of the 1950s through the prism of history is interesting; hearing Sebastian Barry talking about the drama and tragedy of families divided by it in Ireland is utterly entrancing, although that could just be him; seeing the occasional Druid striding through the Parliament of Religions on the news is hilarious . . . but in a Prime Minister? Leader of the opposition? New Premier of NSW? Bugger off.

But, as it's the time of year when lipstick slides off your face and I find myself, mid conversation, distracted by the line of sweat moving down the back of my lef and dripping off my calf - then of course, I'm more than a little distracted by Christmas, logisitics, going to the Post Office, soaking fruit for Chrissie cakes, and by the enduring myth that things wind down at the end of the year. Instead, things ramp up. Deadlines loom. People I'm trying to line up for work become more and more elusive. And I try desparately hard not to be rattled by not knowing exactly what I'll be doing for work next year. Each week, for the last 6 weeks, I've had a conversation about how we've almost-sorta-kinda-nailed down the exact job. Can't complain, even, as I do have an ongoing position in a wildly interesting cultural organisation, surrounded by clever, sparky, opinionated, good people. But detail detail detail. And I've tried so damn hard to be flexible and accommodating and understanding and to proclaim to all and sundry that I'm Fine With That that I have, as usual, been in denial about the impact of uncertainty.

In other words, while making fruitcake, have been behaving, behind the scenes, like a bit of a fruitcake myself.

What Abe would call, in his gorgeously matter-of-fact medical manner, "emotionally labile".

Which is another reason to avoid blogging, because the world needs more whingers like it needs an unresolved, messy, disorganised, Climate Change Summit. Oh, that's right . . .

And on the subject of denial, I'm not prepared to blame feeling occasionally wobbly on my life. But I'm quite happy to blame hormones - while reserving the right to slag off biological determinists left, right, and centre. (Ah, the pleasure of contradiction.) But really, have been on the mini-pill for the last six months, and I never respond that well to fake hormones. I remember being on the capital-P pill when I was 18,19, 20 and it left me feeling all over the place. Not logically depressed, because let's face it there are logical reasons to be depressed, about everything from sexism and inequality to being broken hearted or whatever. And then there are the times it feels bit unhinged and cwazy. And I'm not prepared to be depressed about having a daughter with a disability because really and truly and ruly I don't find that depressing. Oh ok, I do get a little wistful and pissed off in children's playgrounds when there's nothing she can play on, when inclusiveness seems deliberately mitigated against, when the social-medical-financial-cultural systems seem so damn unhelpful, but on a personal level? Nuh. So, time to rethink the whole contraception thing.

Might be time to "get me tubes tied", which instantly catapults me into childhood, overhearing mysterious conversations between mum and her friends. Mum was in her early-mid-40s, just like me, when she went to the family doctor to talk about getting her tubes tied. Unlike me, at exactly the same age she already had seven children. Seven. Did I say seven? More than six but less than eight. More than my two, that's for sure. I was one of the Small Fry, as we were called, the babies. So the doctor looked at her and said, "Mother, but you're a young woman!" Did I say seven? Bloody hell.

(And yes, I know vasectomy is another good option, but poor Abe has been both done and undone, so his Bits deserve a break.)

And when you're 17, 25, 32, and you're obsessed with not getting pregnant; then you're 40, and obsessed with getting pregnant, it can seem endless. This thinking about ovulation. Conception. Terminations. Pregnancy.

Which leads me, of course, to my usual thinking too much into the future. Thinking about my girl, and her life, and her future, and what her relationship to her own body will be. What autonomy she'll have. I was listening just this week to a terribly moving radio doco about disability and sexuality. About the need and pleasure in being touched. And of course, I don't want to be weird about this, as Morgaine isn't even three, and I'm not launching into sexualising her, but they are big, important, issues. She's a very affectionate, physical wee girl. This morning, I popped her into our bed, and she loved the feel of the sheets and being in a different space. She kicked her legs and wiggled on her back. She rolled over to look me in the face. I traced my finger down her nose and across her jawline, which made her giggle like mad. At this age, as a child, she can easily get all the affection and physical warmth she likes. What happens when she's an adult? How long will we still be around to easily hold her hand and let her stroke our arms as we talk to her?

Because in my darker moments, I worry about her vulnerability. Of course. That's the thing about her condition. She has - and I was just reading one of the supporting documents we have - "severe weakness from birth". She will "require ongoing hands on support for all activities of daily life" forever. Which means she can accept your help, but she can't tell you to go away. When Clancy sinks his teeth into her soft buttery skin, as he's taken to lately, she can't push him away or make him stop. She can make a noise, but she can't make that all important sound, that feminist tool, that intervention, that statement of self: she can't say, "No!"

Will she ever be able to? That's what we have to work on. Communication, if not speech. And after trying and absorbing the Hanen Method, thinking about (but not properly applying) Makaton, we're now moving intoa picture recognition system, that will require a lot of intensive work. Of course, it's likely that what will work will be a combination of all these things.

And my hope rises, yet again, as I hear M making different types of sounds. They're Almost Consonents. This is a new category of sound I'd never been attuned to before, the Almost Consonent. Gradations. Her vowels are well and truly there, but the mouth control that goes into consonents are lacking. And so I hear what could almost-kinda-maybe be an M. A glotal stop that could be moving towards a G. Well, at least we're not native speakers of the Click Language. (I really did meet someone once, who spoke that language. She was here for a conference on rivers and land and the meaning of place - or was it of deserts or mountains? - and she explained her conneciton to that place in her own language, before translating it for us. Magic. One of those moments when a person speaks with their face and whole body.)

And oddly, there are no sounds but the whirr of a fan; the ka-thunk of building work next door; and that endless nagging of crows. Because Clancy decided to fall asleep just as I had managed to get all the Christmas presents bundled up and ready to post off; and M's respite carer is here, and has exhausted her with some four-point-kneeling over a footstool (which, given the effort she has to make to raise her head even a little bit, even when you're holding her forehead, is fair enough). So my biggest complaint of the last 2 months has been answered (can I not get two-and-a-half-minutes of uninterrupted time to do something, anything??)

And meanwhile, in the last very little while, an email came in confirming what I'd be doing next year. It means a change of focus, and bigger ideas, sustained ideas, meatier research. Which is great, but I need that reflective space to find and pursue and pitch some of those ideas. All at two-and-a-half-days per week. Time to turn into Eddie from Absolutely Fabulous: Ideas ideas ideas, sweeetie! Ooooh, look, Bolly.

And so, with the bubbles, the attention returns to Christmas. Which, as an atheist, is a completely family-and-friends celebration thing for me, which I do enjoy. I don't mind creating our own rituals, either, even if they are secular. Hell, especially if they're secular. But part of that tradition, for me, is noise and chaos, endless cooking, and going to the beach in the afternoon. Lots of sisters and neices and nephews. But this year, for the first time ever, it's "just us". Helllooooooo Nuclear Family, oh where did your picket fence go, et cetera. Which is a little disconcerting. So I'm trying to remember all the things that exasperate me about a noisy, chaotic, huge, messy Christmas, as there's no excuse not to do the things that just don't work with a huge gathering of coeliacs and vegetarians and 14 year olds and 9 yr olds and 50 year old brother in law who tells the same stories every single year. So I dream of elegant, funky, warm, delicious, relaxing, energising, fun, memorable (ie completely impossible) days of wine and roses. Huh!

But at least I've baked a damn Christmas cake. Gluten free and soaked in brandy. A ring of almonds on top that isn't too wonky.

The ritually flustered and stressful visit to the post office, of course, has yet to happen.

Problem solving, making and doing, and yet another seating challenge

Clancy just fell asleep on my lap, as I juggled a bottle for him and a copy of Charles Frazier's Cold Mountain for me. The character Ada - middle class, educated, suddenly without companionship, resources, or even the ability to get through the day and eat well - describes herself as "immensely cheered" by Ruby, the young woman who comes marching up the road full of plans and demands for equality. I also find myself "immensely cheered" by her. This is a book I can always pick up and reread, while finding something comforting about the details of resourcefulness, building, making, changing and having an impact of the world that these two women embark on together in nineteenth-century America. They plow, grow, mend, make, cook, preserve and barter things in an uncertain world. Meanwhile, there's a Civil War, indigenous history (oops, Native American I should say), and a love story hovering in the background. And reading. The power of reading.

There's something about this resourcefulness though, and the detail of it, that I've always found fascinating. As a child I remember loving the parts in books where people made soap from scratch, or built things, or took me to knowledge of places and practices that were utterly unfamiliar. There was a very old copy of the Swiss Family Robinson on the bookshelf - I still have it, red cover with gold curlicues and yellowing stickytape - that answered those narrative requirements for me, as well as indulging my love for fantasy and invention, flourishes of the unlikely. Because now, that book is a strangely colonial, quasi-religious tract, that invents the "Other" so ridiculously that these Swiss missionary types, with their earnest prayers and endlessly patient Mother with her big bag of everything, supposedly landed themselves on an island that had kangaroos and elephants, donkeys and giant boa constrictors, bears and sugarcane, all in the one place. It certainly made me watch Survivor in a particular way.

So this fantasy, of "making and doing" has had quite an impact. That, and having parents who were born and brought up in the Depression and World War 11, who were working class and proud (in Dad's case) of having a trade, as a builder; proud, in Mum's case, of being an excellent dressmaker who could "run up" almost anything. All of this, I think, has instilled in me a belief in the importance of problem solving. Of fixing things. The only drawback, of course, is that I don't quite have all the skills.

And the challenge of M's disability - OK, one of the challenges - is about equipment. Seating systems. Mobility devices. Shower chairs. Special beds. Standing frames. Straps, webbing, and padding. I blithely tend to believe that there are solutions available and then, when I discover there aren't always or aren't easily, go off in fantasies of making and doing. A girl has to have a shed (although I don't); every woman needs her power tools (or at least, one drill); and at the very least there's a sewing machine.

So my latest obsession is some way to allow M to be more readily included, better able to interact with other two year olds, in a park or backyard. Her lovely chariot makes her too high; the tumbleforms seat is too hot; the shower chair was too ridiculously expensive to haul around the place. I tried one of those little foam lounges with lots of props and cushions, but it left her looking like a crumpled teddy bear losing some of her stuffing, slumped in a corner - although it was a huge hit with the other kids, of course. So I'm thinking I need a child's size fold-up beach chair, with a back that will reach up past her head, to which I can attach a head piece and chest strap, and maybe a hip strap as well.

But it's still "winter", so these things do not exist in department stores at the moment.

But it's still "winter" for a few more days . . . although it reached 35 deg C at 4 pm yesterday. We're not quite Spring yet, and it's hot and dry and gasping. It's not quite Spring and I wanted to spend the day walking with Clancy, doing some decent exercise, building up a sweat . . . but not building up quite THAT much of a sweat. Sunburn. Glare. Dehydration. And. So. On.

So instead, I'll try to invent other solutions for my girl.

Meanwhile, I'm back at work for two days a week, enjoying the fizz and bubble of ideas and deadlines, being organised and talking to people, writing papers and pursuing possibilities.

Remaking the morning: Abe and I rushing around feeding Morgaine and Clancy, getting them washed and ready, checking their little bags, getting ready for work ourselves. Not sure what to wear - I'm reading Linda Grant's Thoughtful Dresser (the book not the blog, but oh look here's the Blog, and wanting to be a bit more playful and a bit more extravagent on the clothes front; saw a fashion exhibit at GOMA on the weekend, and thought about colour and flair. Is this OK, I said to Abe yesterday, is this OK? Is it too conservative? I don't care what you wear, said Only-One-Coffee-So-No-Subtlety-At-All Beloved. Not quite my question, my sweet, I said, but decided on the brown dress anyway. Naso-gastric tube down M, ready to give her some water. Ooops, triggered the gag reflex, there goes the porridge. Oooops, KER-CHOO, an oaty sneeze covers me with porridge. Abe looks at me. Yep, I think that dress is too conservative.

Oh ha bloody ha ha. Still, it did mean I went for the more fabulous option.

So, enjoyed the day spent talking to academics and others all round the country. Making frantic notes. Building new schedules. Not enjoying, of course, the end of each day where I hurl myself off, worried that I might be caught in traffic; worried that I'll be late to childcare; wishing I'd got more done; cursing a piece of technology that didn't behave quite as I expected; seeing clocks ticking everywhere. How long does that last, I asked a friend last night, bowing to her expertise as a fulltime worker with three children. Um, never. And yes, there's a lot of hurling about, isn't there, she said.

Tick tick beach chair; tick tick books to read; tick tick letters to write; tick tick washing to do; tick tick prepare for tomorrow's meeting; tick tick check emails; tick tick guilt. Tick tick it's a beautiful day, let's not get too hung up on those deadlines girlie.

Oh yeah, almost forgot, I also had a "making and doing" attack recently when I was thinking about the challenges of childcare and play, representations of children with disabilities, the idea of dolls that look "like me" or, in Clancy's case, look "like my sister", and whether there might be wheelchairs for dolls and stuffed toys available. And yes, I know there are many fraught arguments around all this, about normalising or not, freakery or not, inclusion and difference, the politics and ethics of it (and so on and so forth, and I do remember that the un-Barbie doll "Feral Cheryl" didn't quite take off), so anyway . . .

So anyway I did some searches online and came across some beautiful toys and dolls, accessories and games, toy wheelchairs and ramps - which tended to cost a gazillion dollars or not be availablea easily in Australia. So I grabbed some masking tape and some lids, a funny little finger puppet someone had given us, and voila, toy-Morgaine in a mobility device emerged (until it fell apart and the carboard seat back fell off):

Smiling through a Naso-Gastric Tube

Nursing, it has seemed to me this past fortnight, is as much about technology as it is about bodies and (of course) language. Calibrating oxygen flow. Measuring blood gases. Taking blood pressure. Attaching dots for heartrate monitoring. Connecting boluses for feeds. Hooking up morphine drips. And being surrounded by machines that beep and whistle and hoot; even by beds that make electronic chirping noises if for some reason the side bar is pressing on the air thingo that's pumping up the mattress that slightly vibrates to mitigate the pressure sore. Bedsores, hey, how terribly Dickensian. Or not, as it turns out. And that's not to mention the marks from the intra-osseous, the twenty jabs from the various heel prick bloods, the bruises in the crook of her arms from the mainline, the arterial line and iv line.

All this is academic and interesting when all you have to do is look on, learn how to turn off the most annoying alarms for (say) 30 seconds at a time, or know what question to ask if you see another person in protective gear advancing with the medication/ feeding tube/ whatsit at the wrong time.

Until they suggest you take some of that technology home with you.

Oh, bugger.

Instant panic followed 15 seconds later by jolly-hockeysticks oh well, time to learn a new skill now type response.

It looks as though my girl will come home tomorrow, but with a naso-gastric tube still in, and a special pump and liquid feeds all ready to go. And litmus strips to test her stomach contents; syringes for water; "sets" to be inserted; and a list of instructions spinning around my head, for Abe and I to follow. All of this is because of a "delayed swallow" that means, in her weakened/ depleted/ immuno-suppressed, delicate state, that my lovely smiling, interactive, back-to-almost-normal, giggly girl (who looks extremely robust and not at all like a delicate wee flower), could inhale food and water and choke or get pneumonia all over again.

So here we go, an even clearer sign of "difference", that serves to "medicalise" her, because even without the machinery attached, she'll have a tube stuck up her nose and a great big piece of tape on her face. Still, that once would have confronted me to bits, but I've now met so many children like that I hardly notice; and every second medical person I see says "is she naso-gastrically fed?" and I've always hapily said "no! Not at all, never, eats kinda normally".

Now I'll just say, Yep.

Oddly, as the speech pathologist, paediatrician, registrar and nurse were talking to me about this -- all professionals, all women -- and I was asking about whether this can be supported in a childcare centre etc, the suggestion was made that perhaps she could just be in ch-care very briefly, or I could go and change over all the feeds etc . . . I realised the presumption was that I wasn't working. The Speechy said, well, we'll just trial it for a month or so, and then she looked rather shocked when I said, "And I'll be back at work". Feeding and "toileting", it's the absolute basics, and why I guess so many "carers" don't do other work. But bloody hell.

Another, rather charming, nurse in PICU (intensive care) asked me, "What I did before I was a mum". What? OK, it's not just about being the parent of a child with a disability, it's the oddity of being on maternity leave with Clancy, as if no one really believes you're going to be back at work. At the same time, in a hospital, you're surrounded by working parents, just as you are in every other bloody workplace.

I was also "practiced on" today by an OS geneticist who had to pass a standard Australian paediatric exam in order to work here, so I got to be one of his test cases. He had an hour to grill me on Morgaine's medical history, examine her, and make up a plan for her care. Of which he spent more than 40 minutes with me, including the social-cultural section where he said oh, and did you return to work after having her (ye-e-e-es indeed I did, buster). He was also pretty funny on the social-relationship angle, as we were clearly too boringly well adjusted and coping, so when I said I worried much more into the future than Abe does he said good good good, I'll say there's disagreement there! (Complementary approaches to imagination clearly don't fit into the chart for such things).

But did I remember to say, in case this sounds like an all out snarky little whinge (rather than my bleak reflections of last time, where it was all about confronting demons) that my girl is smiling again? Interacting? Terribly amused when the baby came into the room? I've been trawling through the bookshelves of the playroom, to find things to read to her, and have found all these books of children's poetry, of the silly "homework sucks" variety, with lots of rhythm and rhyme. She doesn't seem to mind. And a sanitised and slightlyl dated collection of Hans Christian Anderson stories, lacking the wonderful pathos of the very old collections, and baulking at the bloodthirstiness of many of them, while keeping the class and strained sexual overtones. (Hmmm, now that was an overdone sentence.) By which I mean the Emperor's new clothes felt very political; the dogs with eyes as big as millstones had all the class elements plus allowing everyone to be horrible to old women on the grounds they're witches; while the story of the eleven wild swans had some icky abduction in it, but failed to include my childhood memory's fave sob-in-the-throat detail, where the shirt woven from nettles was flung over the eleven swans, but the last sleeve of the last shirt was unfinished, and so the youngest brother still had one wing. I felt ripped off by the lack of that final tragic delirious wing . . . but M didn't mind in the least.

And no, I will not not not pad out that story by referring to wings or broken wings or the transformative magic of children with disabilities rising up and walking (amen) because this is a blog, it's not a matinee movie on a rainy afternoon. It's also, in some sense or another, my life.

And I said to her, Have You Got a Problem? The Question of Disclosure

I went off to a "My Time" support group thing today, for "carers" of children with disabilities. This is a group that  has, in the past, sometimes annoyed me for its general "oh, you have milk in your tea! So do I!!" level of discussion, which then becomes real and connected in the last five minutes as people are haring off to meet their various deadlines. Anyway, today was interesting and strangely moving in the way these things often are. Also, having an opinionated-pain-in-the-arse personality style (while pretending to be "lovely") I had sent an email to the facilitator saying, well, I'd find this useful if it dealt with issues like x, y, z and q. Q being "how do you talk to other people about your kids' disability" aka, the politics of disclosure.

And whadayaknow it came up today.

In some ways, of course, there's no guide for this. There's no right way and nothing can save you from the crack-in-the-voice moment, or even the startle-a-stranger-and-leave-them gasping moments, but I think I"m getting better at it, and better at deciding when to say nothing.

But there was a woman there who I'd met only once before, on her very first time of attending anything like this. She was so raw the pinkness shone through her well armoured exterior (just to mix a metaphor or two but, really . . .). Her son has a condition that's terminal. He's three. And these are the first things she lets you know about him. He's also quite a happy wee boy, who likes puzzles, seems pretty relaxed in a room with strangers, and knew how to keep an eye out for the tube attached to his gastro button feeder contraption. And the first time I met her, we were having the regulation Resilience conversation. How to increase your resilience; what you might do; strategies and so on. We also talked about what we did to keep ourselves sane.

And she looked at all of us, firmly and with conviction, and said:

I Don't Know How to Be Happy.

I can't, she said, think of anything I'd like to do. I don't have any time to myself. I can't even remember being happy.

This rocked me back on my heels.

So this morning, she seemed a bit more positive at least. She'd found something she liked to do and had time to do for 2 hours on a Tuesday afternoon or something equally grim (grim because it was only two hours; and the activity sounded pretty dire to me, too, but I won't go into that as it'll make me sound like an up-myself snob, tra la). But I was also struck by her worldview as we talked about disclosure and talking about your child. She tells everyone, she says, and tells them the name of the disease, and that it's terminal . . . in case one of those people turned out to be a doctor or scientist who might find a cure. And related to that, was a presumption that most people were judging her, were unkind and unsympathetic, and if they asked a question well hey it served them right if they were startled by the answer. So everywhere she went, it seemed, she was looking for both opposition and salvation. Opposition and salvation, I think there's a lot there to tease out, if I had half a chance. Her son was standing up in a foodhall recently, with his feeding contraption, and a woman was "glaring" at them. And so, she said, I said to her Have You Got a Problem? And she said "fuck off" and I said and she said and it all sounded deeply aggressive and unpleasant and confronting.

And, she said, I don't cry any more. I'm hardened. Again, perhaps raw and scraped and exposed, rather; perhaps a carapace of pain.

The ground rules for these types of groups, though, tend to be that you don't find easy solutions or presume to have answers. Suggestions and exchanges and stories, sure. So none of us could say, "Maybe the other woman wasn't juding you at all" or "give yourself a break, don't expose yourself by telling everyone and, really, the person you miss won't be the genius who could find the cure". So we don't say any of that.

The other woman who was there had a curiously flat and passive manner, but she really warmed up. Her child is eight, whereas the rest of us had 2 or 3 year olds; and she was clearly exhausted and worn down . . . but then revealed all these clever strategies. Things she'd done and said; what she'd resolved. The socialworker facilitating tried to say as much to this woman, and she was such a worn down little rabbit that she thought she was being criticised rather than complemented.

So the session left me feeling tenderly towards these comrades-in-arms, even though each of them aren't at all the sort of people I'd hang out with. I tried to raise the question of how we do disclosure so we're not taking over and talking for our kids, but given their ages and inability to speak for themselves it's a bit tricky; and more and more it seems a question the "carer" community is scared of dealing with. But I can't help but think about all the disability-activism about autonomy and identity, and what this might mean for how you do it well as a parent to allow for that. How the hell do I honour that impulse, when Morgaine will be totally dependant on us, very likely, forever? Again again again I do hope she might be able to speak, or sign, or have some system of communication one day. Even if she can't sit or stand or walk, I hope she can one day tell us to bugger off and leave her alone; or say that she wants to do something; or let us know what she things.

Then again, as she stroked my arm while I was feeding her, I like to think she was showing me some of what she was thinking, and feeling. And she certainly knows how to laugh. Thinking of which, my half an hour is up (Clancy is asleep on my back, which makes me feel a little like an earnest cliche), and I need to go and get my girl from childcare. I know the inclusion impulse is working well, because she came home the other day with finger-shaped bruises on her calves, and an impressive bite mark. Yay, for the democratic pipsqueakery of the playground. Snort.

Becoming a Professional Pest

Oh dear, here I go, becoming just the sort of pain in the arse bore I never thought I'd become. Oh, OK, on the bossy opinionated front, maybe it's not that surprising. So far today I have:

- Written a submission to the Therapy Place about why they might change their Board and fix their website

- Written a letter the Childcare Centre about access

- Contacted the Muscular Dystrophy Association to see what support I can get for Miz M -- even though she doesn't have MD. It seems that with an unknown NeuroMuscular Disorder she may be eligible

- Written to the local council about their Park Proposal and the fact my girl can't use any of their new playground stuff (in a shockingly passive aggressive style where I suggested I was sure sure sure they didn't mean it to come across like this and so -- with finger twirlingin a dimple -- where's the real info about inclusion that I must have missed)

- And copied above to the local State member, along with an extra whinge or two.

Sigh.

Something like this:

The Board Thing:

Dear Board Bigwig at the Therapy Place,

For various logistical reasons I was unable to attend the recent Parent Liaison Meetings but, being keen to communicate various thoughts about the organisation, decided to write to you instead.

My two-year-old daughter Morgaine has been a client of The Therapy Place for over a year now, under the “Oh Look We have a Problem” Program (no, they don’t really call it that). My partner Abe and I are extremely happy with the care and therapy she receives, and have also benefited from a range of programs offered to us. I would like to take the opportunity to formally commend the work of physiotherapist X, OT Y, and speech pathologist Z; and to recognise the benefit of courses like the Art Therapy workshop run by Q and J.

Having said that, I also appreciate the opportunity to raise some structural concerns with you: about transparency, involvement, charity models and (in a more functional way) about the role of the website.

In brief:

Representation on the Board:

- Parent/ Carer Representative on Board: Given the number of young clients at The Therapy Place, and that any decisions have a direct impact on them and their carers, I was surprised to find that there is no place for a parent or carer representative on the Board. In the interests of inclusion, feedback, transparency, accountability and – in a very positive sense – to draw upon the experiences and skills of parents, can they have a formal role on the board? Some process would need to be instituted so that parents themselves feel properly and fairly represented (such as an election by parents), which may require changes to the procedures under which the board is constituted.

In addition, given parent/ carer responsibilities, their involvement may need to be constituted differently to that of other Board members: perhaps rotating one year terms?,

I believe these voices need to be heard, and can be heard in a way that is fair, representative and professional. It need not be about an individual parent wielding too much power, nor pushing the rights of their child over others. When done well, it allows for a range of voices and perspectives, for a different type of consultation, and could enrich the organisation.

In addition, it would give weight to what I believe is a prevailing approach to the care of children with disabilities in organisations such as The Therapy Place: that is, fully rounded Family-Centred Practice.

- Person with Disability on the Board: Having made the case for a parent/ carer to be on the board, I have to confess to considerable disquiet about adding another person speaking “for” those with disabilities, given the push over the last few decades to ensure that those with disabilities are able to speak for themselves. Unless I have misread the biographies of members of the board, it seems there is no person with a disability on the board. This surprises me. Surely there are people in the community who could be approached, or even those who have now “graduated” from The Therapy Place themselves?

The website and its audience

- On a conceptual level: It’s not entirely clear who the current The Therapy Place website is for. Is it for clients of the service? Or is it for potential donors to the service? Much of the information presumes the “audience” for the website is a lovely donor, who will help the passive “victims” of a disability. This feeds into a very old model of charity and disability that constitutes the people with disabilities themselves as passive recipients. This, I believe, does a great disservice to the work The Therapy Place actually does: teams of dedicated, intelligent therapists and other providers, working with children and others with disabilities to improve their lives, allow them a place in the world, treat them with dignity and allow them to be active. So why imply otherwise?

- On a practical level: The The Therapy Place website could easily play a more active role in providing information for clients, via intelligently selected links to (eg) government and NGO services available; highly regarded medical and other information sites; support and community groups; disability awareness and activist sites; blogs and other social networking sites that specifically address issues of disability and childhood etc. No doubt members of staff, as well as parents and children themselves, have already found and selected the very best of these sites – but any newcomer is left to flounder, test, search, or never find what they’re looking for. Why reinvent the wheel?

There is an awful lot of information for and about disability available online. Some of it is good; some of it is terrible; and if you’re new to the area, dealing with the life-changing situation of having a child with a disability, it can be confounding. Not only that, the internet is both local, statewide, national and truly international. There will be resources available at all levels. So from Disability Services Queensland to the Inclusion Support Agency; Federal Services to the woman in Austin Texas who writes a blog about her daughter whose experience is just like the experience of the child in the next room, why not better collect and coordinate that information? Presenting and arranging links is not the same as endorsing them, and many organisations do this well.

Finally, I note that the flyer sent out to all of us about the Parent Liaison Meetings says that “interested parents/ carers will be able to meet with the Board during the year”. When and how will this happen, and can it be organised with plenty of lead time, given the logistical challenges faced by so many of us.

Many thanks for the opportunity to approach you: please do not hesitate to contact me if you would like me to clarify any of these thoughts.

 

- Hmmm, must do more work on the whole family centred practice thing, because there's lots of stuff out there, although ti does require evaluation, not to mention finding some of the more recent material

- The Childcare Thingo: no bigger issues there, so not worth copying.

- The Park Thing: Oh yes, let's.

Dear councillor,

I am a New Farm resident with a two year old daughter and a five month old son. I’m a regular user of New Farm Park and, indeed, of all the riverside walkways in the area.

I was very interested to see the proposals for the revamped children’s playground area in NF Park, and very much hope I haven’t left it too late to give feedback on it. The new proposal looks very exciting and creative, with lovely opportunities for imaginative play.

But I must be missing something – and I trust it’s merely the case that the rather schematic style of plan doesn’t provide the full detail. Because as it stands, my daughter, with her disability and being in a mobility device, is almost entirely excluded from the space. Even path access to the new play area, or provision of soft surfaces, don’t seem to be included, making transitions from a pram, mobility device, or wheelchair, rather difficult.

My daughter is only two (and is unlikely to ever walk, crawl, or sit unaided), but already I’ve had to reconcile myself to the fact that older parks give her no opportunity for play, while newer ones may have one or two devices that can be used (eg in Woolcok Park at Red Hill, there’s a hammock-type swing that allows children who can’t walk to be lain on it, for swinging). Even so, with a revamp at New Farm I’d love to see something that includes her, especially given the number of children in mobility devices that I see using the park. (Although paths that allow for easy walking around the whole park, rather than only the small section near the river, would also increase use of the park. As it is, trying to walk the entire park ends with dangerous traversing along the roads. And no, pushing a mobility device through the grass tends not to work.)

I note that there’s considerable good work already done in this area, setting out the principals of accessible and inclusive park design: eg the ACT has just released draft guidelines, so surely there’s no need to ignore these questions?

http://www.tams.act.gov.au/live/about_our_department/community_engagement/community_engagement_activities_and_events/accessible_and_inclusive_playgrounds_in_the_act_-_draft_strategy

But as I say, it may well be that I’m missing crucial details by looking at the schematic plans as they appear on the website.

Could you let me know?

**** and there we have it. I have officially turned into a single-issue bore. Better make sure I write a letter about someting else asap. ***

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.

Who are your peers?

I've been a bit slack on the blog front lately, although I'll also plead to being busy as well. Had friends to stay for the weekend, including a very very charming seven year old, who I've known since she was a baby. In fact, due to various complicated accidents of history, I happened to be near the hospital on the day she was born, and phoned my friend who lived in the same house who told me he was on his way to meet the baby, and did I want to come. There are about a thousand years of classic narratives imbedded in that sentence - complete with love, heartbreak, families, old-fashioned-to-the-point-of-melodrama-betrayal, best friends, and tears - but it's not my story to tell, so I'll stick to the fact that I happened to be close by, in Newtown, on the day she was born. And although I knew that it had all just happened, it wasn't until I was in the room at the birthcentre, with the smell and the smear of blood on thighs, and the lovely little tender creature, that I realised it was all VERY recent. "So exactly WHEN was she born?" I asked, with the reality creeping up on me. Half an hour before. A helluva privilege.

Anyway, she's grown into a self-posessed, lanky, talkative, intelligent wee girl, who told me quite seriously that she knew that she and M were going to be very good friends when they got older. And indeed, they were enamoured with each other, in that sensual adoring way of children. They fell asleep on the floor together like a pair of puppies in a pile; and M kept stroking her arm and pulling her hair and laughing with wild delight at this Big Girl who was suddenly there, and who was even there in a makesehift bed when she woke in her cot in the morning.

And the 7 year old (I can't work out a good pseudonym for her!) spent a very dedicated hour drawing a picture to go on the fridge, of the two of them in the park. She explained to me that because M couldn't sit up or walk, she drew them together lying on a rug, with the playground equipment all around them. With the unerring eye for detail, she made sure to include the rick-rack braid around the bottom of M's pants.

So after my anxiety of last week about M's cognitive development and skills, all I could see shining out from M was awareness and intelligence and sociability. I know I have to keep monitoring my own expectations, so I don't burden her with them, but I can't shut her potential down by presuming what she can't understand. So she can't wave goodbye or hello, but her whole face lights up in a greeting, and the soft reaching up to the faces she wants to reach is surely a form of communciation?

And I was reminded today of the way we all carry our own observations, when the woman at the childcare centre commmented that she liked what I'd written on M's sheet, about her favourite activities and foods and things to do. I looked at her blankly, so she showed me what she was talking about, and it was Abe's handwriting and rather sweet and attentive description of what she most likes to do. Huh, and he pretends to be such a hard-arse sometimes . . .

But in the context of the childcare centre, I was forced to confront the questions of "inclusion" and who your "peers" are recently. M gets most of her ongoing therapy through a large NGO that specialises in rare and debilitating (is that the correct word to use?) physical disabilities. It's for young things up to 18 years old who don't "fit" into easy categories, and who can't be catered for by specialist organisations like, say, the Cerebral Palsy League etc etc. This means there's a team of therapists who regularly come to see us, to suggest equipment, to develop programs, to show me exercises etc: a young and sporty speech pathologist; a very kind and sensible occupational therapist; and a completely down-to-earth no-bullshit physiotherapist who's very good at helping me reorient my sense of the world. In some ways, of course, they all do that, because what's at stake is the relationship between the physical and the cognitive and the systemic and institutional and governmental. But Cassie is particularly good at doing this, with a generous dose of warmth and humour, and a hilariously sceptical and even exasperated approach to some of the more ridiculous bits of bureaucracy etc around the place.

She's been involved with helping us negotiate arrangements between the (community based) childcare centre and the government "inclusion" agency. I've come to see that the whole idea of "inclusion" is a fraught one for many people, and can bring out eyerolling in the most allegedly right-on lefties you might think you have a lot in common with, especially when it comes to education. Because before they know it might be about you (me), someone in the room with them, then there are snorts about the "problem" of dealing with "these" other children. But there's a whole literature and debate about that and I won't get into it here.

It's less fraught, so far, in a childcare centre, where M is - at 17 months - still in the "babies" room. She's helped there by equipment organised through the inclusion agency, as well as provision of an extra worker for 4 or 5 hours a day whenever M is there. In addition, Cassie and the other therapists from the Therapy Place regularly come and assess what's going on and provide advice and do lots of other great stuff. But other kids M's age have begun moving "up" (ah, the heirarchy!) into the next room. So I mentioned to C that as part of the ongoing assessment of M's involvement with other kids etc, I wondered when she'd move "up", and what this means for her interaction with her "peers".

Immediately, Cassie responded that it raised the question of who her peers are, and how that's understood. And whether it would really be a good idea to have her in a space with toddlers who could rocket around and who she'd never be able to see except as colours and shapes that flashed by; who she couldn't roll over to; who she may or may not be able to interact with. And there was I with a completely uninterrogated set of presumptions about what "inclusion" meant, and why that meant she had to be with children her own age, in mainstream schools (by which I mean public schools, for which I've had a long and feirce ideological support), making sure that she knew who her peers were. And in a few minutes, C had confronted me with just a few questions and sentences to make me question all of that.

That's quite a skill, I reckon, and I've been absorbing it ever since. I decided it wasn't going to floor me too much, or reduce me to soggy tears etc, when it really m ight just be a case of chilling out.

At the same time, I really do still recoil from the idea of a ten year old spending her time with 5 year olds, as it seems to fit in with the completely debunked - but still popularly maintained - idea of a person's "mental age". As in "he's 18 but has the mental age of a 2 year old". Now, we all know that type of thinking is complete crap, but it doesn't mean it's not still out there. (And I found an acedemic paper online that explored this, in terms of learning disabilities etc, and placed it in the context of the history of modes of "normalisation" in models of disability.) And I'm not suggesting that that was what C was saying, either, but it does need some thinking about, aye.

I wonder if anyone else out there has dealt with this one, and what's happened?

A woman I don't know just made my day

Huh, there you go: a reader! Thank you, Virginia Harris from the US. It was a long day - not a bad day, but a long one, definitely. I woke some time after 4 am, to hear the baby cooing away to herself. Abe got up and gave her a pat and checked her nappy and climbed back into bed and wrapped himself around me. That was nice, so I snoozed off, and awoke some time after 5, literally dripping and slippery with sweat. Hmmm-hmmm, too gorgeous for words. Hot because of the pregnancy; hot and sweaty from crazy hormonal dreams; hot from too many covers. Coughing half the night, bugger it, I think I'm getting some sort of coldy thing.

Morgaine was gurgling away, so I got up and did the bottle and breakfast thing, and still managed to be later than I wanted to be. Got to work at about 7:45, leaving Abe and babe behind to do the rest of the morning and childcare wrangling. Only two more weeks left at work before I'm on Mat Leave though, so there's a shitload of things to do, to organise, to write up, to handover, to do briefings on, to make sure I don't forget. And something I've been working on since May still isn't finished and gets more complicated by the minute.

Spent an hour and a half filling in the guy who'll be filling behind me. Another hour on the phone to the guy whose job I'm filling behind. Another hour or so with another colleague doing a job I used to do, with lots of energetic feedback and ideas and filling me in on new freelancers and others. Millions of emails. Reports to write. Some now very very late surveys I'm supposed to do.

And Myff tells me via email she may have to have some invasive, gynaecological, surgery, and I run out of time to reply. Damn damn and damn.

Discover in between work commitments that it's hard to find a paediatrician who might work as a conduit/ overview/ adviser for M. Have contacted 6 in the last few days, who've been recommended, and who aren't taking new patients. What?? Missing Sydney and having a dose of the "what type of berloody city is this anyway" things, and then finally find a woman who will take us on. Felt as though I had to prove M was going to be an interesting case (trust me! she's an enigma! we may never get a diagnosis! Surely that's a challenge . . .)

And of course, Morgaine's name is not really Morgaine, although it was on my personal list. It was vetoed by his-name's-not-really-Abe very early on in the piece. M's name is a little more unusual, and is destined to be spelt aloud forever and slightly mangled. So I was interested although a little annoyed by the tone of the recent Life Matters Talkback on names, which was a little too Anglo in its approach to "unusual" names. As usual, there was some good stuff in there, but it hardly acknowledged the migrant history of Australia, and the long tradition of names being changed. So was pleased to come across this Salon article on the politics of naming especially in the black American context. Not that M's name is a political statement, in case it looks like I'm making any grand claims here.

Where was I? Oh yes, writing in an unstructured way. Would usually either make all of these points discrete, or re-order and restructure . . . Instead, let's see how a bit of streaming goes, hey?

And I do know that in one of my first posts, not so long ago, I mentioned the diarist Samuel Pepys and so was pleased to come across this article about him, his shorthand, his sexual "peccadilloes", and let's face it his mysogyny and violence and arrogance . . . as well as the delicious daily life details of him being distracted by the small of shit from his neighbour, of him NOT cancelling a dinner party on the night of the Great Fire of London, and some great observations on the bourgeoisie and work from the reviewer. A reminder of why History matters.

Oh yes, that reminds me, my fave online feminist history site is Philobiblon.

But where was I, again? No, I need a bit more structure, and I seem to have begun this one not so much around an idea as a chronology ("what a difference, a day makes" -- lordy lordy, I can even hear her singing it). And the working day ended as so often, with the last hour an intense gallop towards the clock, knowing when I have to leave to pick M up from childcare. Cramming in phonecalls and emails and updates and decisions, and surprising young women in other parts of the country by saying I'd heard they did good work, and wanted to know more about who they were, what their skills are, and whether they might be available for 4 weeks, 3 months, 5 months of possible work etc.

Listened to the repeat of Late Night Live on the way to childcare, on the other side of town and closer to home, with some great stuff on the identity of Brisbane with journo Tony Koch and aca Julianne Schultz. Had been feeling a bit jaded and small-townish about the place in the last week or so (did I say I still miss Sydney???!!! well I do I do I do), so a reminder of its vibrance and art scene, the political radicalism that came in response to Joh Bjelke Petersen, the importance of the Springbok tour (although I was too young for that to register as other than historical) and, of course, the importance of the Fitzgerald Inquiry  which I do remember . . . made me feel better about having moved here 2 and a half years ago. But not entirely reconciled.

So, arrived to pick up my girl, who was in the midst of all the other babies and toddlers (great), but lying on her back on a cushion while they all sat up and did their thing (not so great). Was so pleased to see her didn't have the courage to suggest it'd be better if she'd been put in her TumbleForms chair, so that she could sit with them, be in the same eyeline, interact in a different way. Besides, I know they're very good at having her interact. And apparently she played with "goop" today, as part of a whole sensory play thing.

And ah, the warm soft smell of her neck as I carry her out . . .

Then home, and as she's sitting in my lap we check the home computer, and there's a lovely warm reply from Robin Barker, per my earlier post, and a response from my first ever known reader of this blog. Huh!

And to keep up the momentum, M and I do the whole bottle and cuddle thing; sing some songs; she plays in her chair; I finish making a batch of marmalade (yeah yeah, whatever, I find it relaxing); she's thrilled when Abe gets home; dinner of a slightly-too-gristly Osso Bucco I made (yes I AM the cook in the household, but abe does all the washing up and cleaning up and washing). M and I play on the lounge with a ball, even though she keeps sliding off to the side because she can't sit up unaided; while I have one eye on the Brit series "Grumpy Old Women", which had its amusing bits but really I want to grumpily declare they should retire the berloody franchise now . . .

And Abe has been playing with the baby downstairs, and now she's all very cute and ready for bed in her flanny jarmies, here on the spare bed in the study, while i think about heading off to mine, to read a reasonably entertaining history of cleanliness, or maybe to go back to the beginning of David Mitchell's Cloud Atlas because it was so fabulous, or to pick up A S Byatt's Possession for 846th time, because it's the comfort read du jour.