Ramping It Up: Children w disabilities, opinions, books

Disability Blog Carnival: On Work

This is worth checking out - latest disability blog carnival, on theme of work - although reflecting on types of work that may be available for Miz M, why work and identity can be so profoundly linked, and the impact of being a carer of a child with a disability (hey, let's face it, the initial impact on work of being a parent) will wait for another day.

Dealing with Disability is Fine: It's the phonecalls that shit me!

Peopel who don't know you gasp and think life must be unbearably dificult, draining, and emotionally tough when you have a child with a disability - but to be honest, it's the endless phonecalls, wrangling and organisation that can shit me to tears. Picking up Miz M from childcare yesterday, where she beamed delightedly and kicked her little legs and waved her arms, that was lovely. Trying to help her eat slices of mango was sticky but, hey, just fine. Making the fourth phonecall to the same organisation to try to organise for her mobility device to be fixed, on the other hand, brought a hot flush of frustration to my face and tears of irritation to my eyes. Put on hold while the woman I needed to speak to was on another call, after which the original unhelpful phone-answerer got back to me and said oh, she's left now, and won't be back till tomorrow. This, at 9 am.

Or the woman from a (different) organisation who arranged a time for it to be repaired, without telling me I was supposed to come to the workship at a suburb somewhere-or-other. (My only other experience of having it fixed, technicians came to me.) And what do I do with Miz M while it's being fixed, lie her on the floor while Clancy runs around the workshop juggling screwdrivers?

And yes, I would like to buy that little hammock chair you sent me the quote on and that I emailed a response to and left a voicemail message and three messages with your colleagues about. Oh, really, I didn't get any of those messages.

And can you confirm that the referral has been received for the initial gastroenterologist appointment to assess my girl for a PEG, so we can stop doing the naso-gastric tube every morning? Yes, I'm the one who's been calling every week, and I know it's October, but the referral was supposed to be sent from July. OK, thank you, I'll call and hustle the paediatrician's office again, and send an email again, and I guess I'll speak to you again next week.

Oh my, it must be time to call the airline about our trip north: two different enquiries people (one in Hobart, one in Brisbane), and 4 phonecalls; "Special Handling" section (4 phonecalls and one email, with attachments); Civil Aviation Safety Authority (3 messages and missed calls, one very helpful phonecall). Don't ever lose the phone number of the people who were helpful; bookmark all the relevant websites; check and keep the rights and responsibilities.\

More letters and emails and attending one meeting with the head of the childcare centre about why the accessible gate hadn't been finished. More to do there.

Health care card, medical report, and physio report to the childcare for the Inclusion Support Agency to try to get more support for Miz M for next year.

Lordy lordy, I'm even boring myself here.

And to think it woud've been nice to add a poetic, reflective, funny (ha!), experiential, story with links, razzle-dazzle, a song and (why not) a recipe thrown in?

Oh, perhaps not.

So, it's not the emotional difficulties of having a child who has special needs, it's the logistics, the wrnagling, the organisation, the endless communications. And hey, I can do this stuff. Abe can do this stuff. It breaks your heart for people who can't. But allow me: it can still piss me off on days when ther emight be other things worth doing . . .

Hmmm, a whinging post, not really my favourite kind. Note to self: must do better!

Why a child "just like yours" can be confronting

I spent time on the weekend speaking to a woman whose daughter was rather a lot like Morgaine. And there we have it, the dreadful and heartbreaking use of the past tense. Her daughter died a few years ago - a heartbeat ago, just yesterday, so close I imagine this woman still hears her sigh in her sleep - at the age of about three. I know this woman professionally. Not only that, she is Capital P professional, in a good way. She's very smart, highly articulate, and utterly competent. Also brisk, and fairly private.

I knew about her daughter, even though we'd always worked in different cities in the same organisation. It's one of those odd things, how these stories circulate - although they circulate with warmth, and compassion. Even so, I'd been lead to believe (before I had Morgaine), that her daughter had been so very severely disabled that she was hardly able to "do anything". I can't remember whether anyone ever used those terrible vegetable analogies. I hope they didn't, although a fearful part of me hears their echo. Because now I know that her daughter was pretty similar to Miz M. They both have types of Cerebral Palsy; both can't sit unsupported at all; both can't crawl, or walk, or talk. Both have hardly any head control. Both would be either sitting in a mobility device of supportive seating arrangement, or lying on the floor. Nothing in between.

Both much loved.

So on the weekend, we were in an unusual situation, meeting up socially with a bunch of other people, and with children in tow. Clancy has just turned one, so he was running around with glee, absolutely thrilled to meet these people, doing that indrawn-breath of laughter and delight, that wheeze of pleasure, that we grow out of. And M was there, partly in her chair, partly on the floor, and so this woman and I talked about her daughter: who was social, who was happy, who also needed a high level of physical support. We talked about therapies and what was available; about her experience of the UK where provision of services and equipment seems much much better than it is here (despite the way people love to slag off the NHS). She told me about carrying her up and down stairs and about Conductive Education. We talked about standing frames and travel, supportive seating and mobility devices, thickened water and modified barium swallow tests.

She was warm and straightforward, full of information and useful acronyms, ideas for support structures.

And part of me knew it was killing her.

She never let her lip quiver or her eyes gleam, and I was torn between knowing that to acknowledge it would be both awful and a relief for her; and also that it can be so very hard to talk about her like this, in the present, in this way. So I hoped it was some sort of validation.

And so she knew I was thinking about that; and I figure she knew I was fearful of the final detail and the terrible threat of death that hovered around us both. Her daughter really was very like my girl. They thought they had it sorted. And then, one morning, they went in and she had died. I know it was unexpected but I don't know what happened. One day we'll talk about that.

We emailed each other the next day, just to check in, to acknowledge the power of being able to talk about her; and so she could admit that yes it was difficult. Also, she said, your role changes, you're no longer a carer, and that's a strange shift too.

In a week that's officially Carer's Week, it was both lovely and scarey and heartening and thought-provoking all at the same time.

Just for the record

Am almost weeping with frustration trying to get info on travelling with small person with a disability and whether/ how/ with what supporting documents we can a. use her mobility device through security of an airport and up to a gate lounge, and b. use her special needs car seat on board.

Helpful person no 1 from major airline: You need the "special handling form" from our website, download it and fill it in, then talk to our people. And no, you can't take a mobility device like that to the door of the aircraft.

Can't find the form on the website, so ring back and talk to:

Helpful person no 2 from major airline: who gives a COMPLETELY DIFFERENT STORY.

What odds that I ring again and get another completely different person and completely different set of info, while Clancy has 1-yr-old-meltdown in background?

Aaaaaaargh.

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.

Then they look at you dewy-eyed and say, "You're a GOOD mother" . . . and I think of ten sardonic responses in 5 seconds

First, to get a few things off my chest: I just went to my first ever "singing-and-rhyming for under twos" in the local library, and on the whole, bloody hell, what a bunch of uptight first time mothers. Sheesh. Clancy was loving it, and wanted to meet everybody and wander around and be social and crawl on top of other kids and be generally thrilled. Which, I thought, was the point of the whole thing. Or not, apparently. Every other child was a bit younger, was not so mobile, and was resolutely clamped on a parent's lap (I say parents, hopefully, but ok ok it was all mothers), with some of them looking alarmed as he got too close. Which made me not at all willing to be social. Except for the woman with the v small bub up the back, who I'd seen around, and who had an indy look about her rather than a glossy blond-bob look about her (oh bugger off, yes I am prejudiced), and we had a rather nice chat at the end.

Also, I was once again on a mission to try to find something that I coudl use for Morgaine to sit in and interact with other kids in parks and backyards. A small, folding, beach chair with a tilt or various positions for the back, to which I could attach chest straps and head support. Is that too much to ask? Yes, apparently. SO in the process I found myself looking at various websites for specialist disability equipment, all of which was hideously expensive (ie $500 and more, mostly a lot more); and then also found myself looking at a no of different Cerebral Palsy sites, given that her PVL is a type of hypotonic CP. Well. That made me feel flat and depressed as well. (Also powerful, but a tad depressing, was the Access Economics analysis of CP, which talked about the economic impact as well as setting out life expectancy etc in a rather flat way.) First, many of them ignored hypotonic CP altogether, as if it didn't exist; and then I chanced upon other, properly referenced material, that said her style of CP represented 2% or less, especially at the severe end, which made me question AGAIN the defensiveness of the woman from the CP League who got all snippy with me when I suggested that, as it was the rarer form, their services might be on the whole directed to the other type of CP. At which point she rather condescendingly said that while it might be new to me it wasn't really unusual for them and (subtext) I didn't know at all what I was talking about. Well, I know stats are often misused, but a 2% incidence of something would suggest rare; and given the gradations of severity, and that M is clearly in the "profound" category, why the fuck was she so unhelpful and forbidding?

I raised this, broadly, as an issue with the paediatrician recently, when talking to her about access to services. I put it more politely, and tried to frame it in terms of gatekeeping, resources, information and transparency. All of which was rather over-egging if not over-intellectualising the disability pudding (as it were), as she said: "Oh, yeah, the Bitch on the Switch!" Hah.

So too much time online, looking at disability stuff, left me feeling a bit flat. Going to the library with the little energiser buddy raised them, slightly, as long as I was in a bubble that didn't require any "bonding" with other parents. Then headed off into the park where I bumped into a woman whose son also went to the Special School playgroup with Miz M. A story there, I suspect: I gather she has a pretty tough life, her son spends some of the time in foster care, and he generally looks at the adult world in a completely freaked-out way. Still, she and her son were having a v nice time on the swings.

But but but, I can't complain. I'm back at work, and it's terrific. Ideas, deadlines, collegiality, lots to do, creative possibilities, and the usual dilemma of wondering how far to just do what I do, and how much to change things, give challenging feedback, do extra and so on.

Also, have a challenging and interesting opportunity to submit a historical article to a scarily impressive OS journal. I need time to immerse myself in it, and Clancy having a 20 minute sleep (now) isn't it. Still, it adds to the froth and bubble of life.

In other words: mustn't grumble.

Oh, go on.

So, I keep returning to something that happened a few weeks ago, trying to decipher what it means, whether it's about identity politics or defensiveness, whether it's a feminist issue or simply one of over-reaction. Some old friends of Abe were in town, for an international HIV/Aids conference. Three visiting doctors, one from NZ, two from Sydney (a couple). The woman in the couple does academic research, and they have a newish child, too, who wasn't with them. Although it's not my area, I find the whole area of health policy pretty interesting, and have followed it for various work projects in the past; and of course Abe and I talk about it as well. So we were talking about that, and it ranged far and wide. We were also talking about related areas of health and hospitals, diagnosis and medicine, cultural practices and the drama of medical interactions - especially given some of the stuff Abe and I have had to negotiate recently.

But in the course of talking about observations I'd made in the Paediatric Intensive Care Unit, the NZ doctor said to me, "So, were you a nurse?" Hmmm, why did she say that? No, I said, I'm talking about what I saw with Miz M as a patient. But what, I wondered, did that say about heirarchies and gender, professionalism and (even) being seen as "partner of" Abe? There was also that use of the past tense, given Clancy's age, which puts all of those questions of work-based identity into an odd frame. It's also that strange, disorienting thing, of not being in "my city" anymore, where people know not only who I am but who I've been, what roles I've played (as they've changed, even professionally), and so noone here in Brisbane would anymore say, "Oh, you're a historian aren't you?" where people from Sydney would. Also, of course, there's something in there that says doctors (Abe) hook up with "nurses". It does mean I've trained myself, over the years, and way before I met Abe, to make sure that if I hear women talking about medical issues, I ask them if they're a doctor (not, "Are you a nurse?").

Anyway, I think she wished she hadn't said it and I don't want to demonise an extremely nice, intelligent, interesting woman. But you get my drift.

But the evening went on, and it was terrific. Really interesting people; lively discussion; good food (moroccan style chickpea salad sprinkled with sumac and goat's cheese); and some damn fine wine. Then, as the Sydney pair left, the woman looked at me with rather dewy eyes and said, "You're a good mother". I know it was meant completely and honestly and warmly, but I was a little taken aback. I wasn't sure if it was also an identity moment (I suspect it wasn't), or simply that thing which I've seen before, where people are so overwhelmed by the idea of a child with a disability, that they see coping with it, cheerfully or at all, as somehow heroic. It's easy to forget, for us, when you're in it, that it can seem such a Big Deal to other people. It makes strangers, and friends, quite emotional.

Perhaps that's obvious, but it still sort of rocked me back on my heels, and I didn't quite know what to say.

It made me realise that it's NOT something I say to my friends, unless perhaps in a crisis where they think they're not being a good parent, or want to test out an idea, or are seeking reassurance. Maybe it's from years of not being defined as a parent; maybe it's about being a sort-of-singleton till the age of almost 40, where my sense of femal identity was formed in other spheres. So when it comes to complimenting my women friends, there are other things I think about. Some of my very best friends, of course, do not have children: so I celebrate their wit, am happy to talk about their craft and skill with words, their highly visual way of dealing with the world, their warmth and humour. Other friends are mothers, and indeed excellent at it, but unprompted, I'll tell one how very good she is at her job, and why the way she deals with people, and her visionary sense of the big picture, is really admirable. So should I be telling these women they're "good mothers"? Maybe I'm caught in an old paradigm where, yes, it does seem overly reductive to me to tell women they're good mothers, as if that's the only thing needed to define them. Of course, I wouldn't in a million years want to call anyone a Bad Mother, although we can all call ourselves that in an ironic, martini-at-4, Ayelet Waldman kinda way. And that's funny.

Treetop walkways and bushwalking with a mobility device

So many allegedly "green" and other critiques of the world - especially about consumerism, authenticity, travel-versus-tourism, footprints on the world, and heaps of other things but I'm not in a list mood - are based on the unencumbered, the able-bodied, the young and the righteous. And hey, I don't like being put on the defensive. But here goes. If I could have an "authentic" experience, off the beaten track, with nature and without pollution, without too much luggage - or baggage - then I would. OK, well, if it involved camping I wouldn't, to be honest. I've never quite seen the point. But work with me on this. So if I could, I might, and if I did, I'd catch the train, and hoist a bag, and carry a bottle of water and a book, and hold hands with my fella, and we'd slather ourselves with sunblock and jump into the ocean without looking back.

Instead, when we head out, there's a carload of stuff. There's back up. There's a heavy-duty mobility device, pretending to be a pram. There's water, for three of us; but there's thickened water for Miz M, so she doesn't aspirate. There's carnitine, for Clancy, in case he decides to go into a metabolic meltdown. And yes, there are mobile phones, all charged up and ready to go.

But we still want to just run onto the sand, dive into the waves, hare off up a path. Like many a parent of toddlers, we can't; but unlike some of the others, we have to assess those paths with a practiced eye. Look at the curve. Contemplate the buried roots. Think about those rocks.

And so, instead, we ended up in the Lamington National Park, at a guesthouse, driving up a winding winding road on the Friday night. Abe, tense and tired and grumpy after a difficult day/ week/ month at work. Me, slightly unprepared and feeling hassled and hussled. Every 100 m or so there's another sign warning of a "blind corner", a single lane - but no warnings about unexpected demands to read maps, to alert to signposts, to beware overhanging cliffs or conversation, falling rocks of comments, and other moments in the front seat. No dramas in the back: two small children in flanelette pyjamas as the weather was strangely cool, and we were heading skywards. So, conversational gambits wound through my head as dangerously as the road, and came out like those wire baskets that stop the side of the road from falling in. One of my brothers-in-law spent a terrible summer filling and making those; a desparate job and days relieved only by drinking too much at the end of them, and talking shit with the instant-friends from the work group (him, not me). So instead, we reverted to silence, while on Radio National a terribly amusing grandson of the bullying, clever, dreadful Waughs spoke about fathers and sons, literary antecendents, and the power of letters in the archive. Funny and inspiring, but the road curves didn't get any easier.

Finally, we arrived, and it was cold. So we cranked up the heat in the room and dehydrated ourselves and baked, tossing and turning under covers imprinted with "regent bowerbirds" with their flashes of orange, while Clancy complained and wiggled and would only settle in our bed, where he threw out wild and indiscriminate little arms, to wack us each in the eye.

The next morning was clear and beautiful. Poor Abe was exhausted, and he and Clancy curled up together, sweetly snoozing as we'd finally made the room comfortable. So Morgaine and I headed off for a guided birdwatching walk, at 6.30, where we met up with a group of mostly-elderly cheerful couples, one funky pair of 40-somethings, and a woman who I thought had woken up in a giant flanny nightie and slipped on a jacket, ugly shoes and a fleece jacket, in what seemed a moment of bravado and confidence, and I was ready to admire her bushwalkery don't-give-a-damn . . . and then I realised later it was just a terribly unflattering skirt. Ooops. So we could mostly walk along the walkways, and see dozens of birds, explained by a dry, knowledgeable, interesting woman. Flashes of colour. Strange sounds - including a "cat bird", that could easily have been rechristened a "strangled cat bird" - and iconic sounds, given context.

Iconic sounds, like the "whip bird", which I've heard so many times, echoing around the bush, but had never seen. Birds that mate for life, and a more confident male came skimming and hopping along the ground, to accept various approved-offerings to take back to his mate. A sound that echoes off cavernous skies and across valleys, implying high branches and grand outlooks, but which instead come from the ground. I've always associated it with bushranger Ben Hall, and the romance of his defiant, anti-state stance, all fed by populist writer Frank Clune, and the TV version which gave me one of my first ever childhood crushes.

Morgaine, I suspect, wasn't thinkign about bushrangers as I pushed her through the bush, but she did seem to enjoy breathing in the air, hearing the trees, and getting ready for an extremely large breakfast.

Later in the day, we went on another boardwalk, up to treetop level in the rainforest . . . and this is one of the few ways she'll ever get to experience the bush. It'll be constrained, rather than wild and unexpected. It has to be wheelchair accessible. It can't easily be off the track, taking another path, following the road less trodden. So many many constraints for my sweet girl, and there's a challenge for parents of a child with a disability: how not to overly constrain, overly manage, hem in? Are those treetop walks a wonderful opportunity, or ridiculously lame?

Still, some of that managing of experiences is just about childhood, not about disability. Communing with nature? Well, how about paying 4 bucks for a metal tray of birdseed, especially selected so as not to damage the natural feed patterns of the Crimson Rosella . . . and then being swooped upon by these gaudy, raucous, beautiful, bright, unlikely looking birds. Clancy was entranced and amused; Morgaine laughed out loud and shook her feet at them; and I thought having these beautiful, raucous, bright (you get the picture) birds walking on my arms and landing on my hair was EEK GET OFF ME!!! GO AWAY! GET YOUR SCALY LITTLE FEET OFF MY BARE SKIN YUK YUK YUK. Apart from that, of course, it was fine . . .

Then on the way home, on the Sunday afternoon, we were able to enjoy winding down the mountain and actually being able to see. While at the bottom, there was a vineyard with a tasting room, and a river with simply gorgeous trees and outlook and a huge homestead, that - apart from being in completely the wrong state - seemed very Ethel Turner, very "Seven Little Australians". I had a surreptitious check under the tree to check that Judy wasn't there, squished, in one of the most memorable moments of melodrama from both literature and tv for me, rivalling my crush on Ben Hall. I always overdid things, as a kid, so as well as reading Seven Little Australians, I searched out the other books that followed in the series, including "House at Misrule" (is that what it was called?) which the librarian sourced from one of the teacher's own bookshelves. One of those ancient books where the pages are crisp, and corners break off it you're not careful. Now, I think that was a helluva effort that woman made for me, a ten year old who wanted to read ALL the books in the series. I can see the library now, a demountable, and a small round woman with dark hair.

From that, though, the idea of "Misrule" has always appealed to me. It appeals to me as a carnivalesque idea, but there's always been a touch of Australiana about it for me: a rambling house, a bunch of kids, some 1890s-style nationalism that proclaimed the Aussie kid as "different", by which she meant "different from" the English. But when you're ten, that "other" is hard to identify, even if you know it's there. And at a pinch, I wonder if I can remember their names, without checking: let's see - Meg, Pip, Judy, Baby, Bunty and the Major. I think I've left one out. None in a wheelchair, of course, because the tree branch that fell on Judy, in the book - and in the TV series when I was about 8, that broke her back, killed her rather than injured her. No space, there, for surviving in a different body. With the tree, she both lost her defiance and kept it forever. Remained an ideal. Occasionally, but not very often, that actor turns up in other roles on TV, and it's always surprising. She must have extricated herself, you think; she walked away after all. Perhaps those legs will walk, after all.

The practicalities of disability equipment

I remember first beginning to use the internet properly while working as a researcher at a university many years ago, about 1992 maybe, beginning with a program called "Telnet" and then "Netscape". There was a lot of talk about the "web" and the "net" metaphors, that seem terribly dated now that even yesterday's language is about social networking, and the conceptual frame has become - oh, I don't know - three dimensional-public-square-meets-avatars or something (and even that's not exactly up-to-the-minute). So as we become skilled at tracking ideas and resources and information in a lateral way, squirreling down various holes, then bookmarking ready for a return, it's easy to forget just how traceable the bits of webbing can be. The individual knots.

One of the interesting things about having a blog is that it's possible to see how some people got here, and to click on the google or other search. Immediately, it reminds me of just how lost you can feel when the whole disability world is suddenly part of your life; to be reminded just how little you actually know about equipment, therapy, what's available, what's proven, what's speculative, what's downright nutty and dangerous, and what might stop you in your tracks because of the pathos of it all. So many many of the searchers are things like "naso-gastric tube feeding" + "children"; or "supportive seating" + "low tone"; and in the hope it might help someone else out there, as I remember some of the things I wanted to know and couldn't find any decent info on: "what the fuck do I do now I've discovered my child is never going to walk?"

Not that I have any answers, mind you.

But here's a quick equipment update: the Kimba Spring supported seat with mobility base works just fine. Ours doesn't look quite like the link, as M has to have an oval chest strap or else she'd fall forward, and so we don't have the bar thing on it, but do have a tray that can attach. It's one of the few that has proper head supports as well as trunk and hip and back support, with everything adjustable. (There're great seating systems out there that presume a child has neck and head control.) Also, it sits inside on a special base, with heavy duty metal feet that you can really kick the shit out of your toes on if you're not careful. But that's the case with almost all of this equipment: it takes up space; and has a large footprint to keep it stable. So if you're stumbling around in the dark you curse it mightily. It also has a "mobility base" that makes it look like a large pram. I had a few weeks of getting hot and bothered while trying to pick up the seat off its indoor base and attach it to the mobility base thing. I always seemed to need to see what was happening underneath while attaching it, which was impossible. There were a few more months of wrestling the damn thing into the boot of the car, as it weighs a tonne. All of that is fine now, except it looks dreadfully battered and spattered and scratched, and it's supposed to last for years. And the stupid footplate won't stay up properly, which can be maddening. And the adjustments aren't that easy to make, unless you're a professional. But once someone else has readjusted it, it's invaluable. Mind you, to get the tray table in the proper position so it supports her elbows and is close enough for her to use, means it's on an angle and any toy slides off and lands on the floor . . .

The Tumbleforms chair puts her in a lovely position, and is what they use at childcare, and can be great when visiting friends, but is clearly not designed for the Australian climate. It gets very hot and sweaty. (Actually, the same is true of the Kimba. Accessories are all about keeping warm, so the sun shade on the Kimba bit can leave her rather exposed. Sunblock and hats all round) Still, I panic at the thought that the Kimba Spring might break, as it would be completely impossible to get her around the place, or to be at childcare etc.

We also have a Leckey supine standing frame, which is the best looking item of equipment, partly because we never feed her in it, so it doesn't look quite as disgusting. It's in a fetching pink, and is pretty easy to use, although the headrest swivels about a bit sometimes, and the bolts and things seem to spontaneously loosen, so you have to do lots of checking and retightening. The great thing though, is that it has a lock at the back so that wee Clancy (who's only ten-and-a-half months, but is very physically adept, and fiddles with everything) can't actually flip her up and down like a trick-trapeze. Which is a useful thing, really.

The "Carrot" Medifab car seat also works just fine, but like almost all special needs car seats, they're not properly approved through Australian Standards (which are pretty good when it comes to safety, indeed better than the standards from a lot of other countries - so OS designed products should spend the extra money and time on proper accreditation, it seems to me). I need to find out whether it's approved for use in a plane, should we ever manage to travel anywhere, as she sure as hell couldn't sit in any sort of normal seat.

All of the above are scarily expensive, with varying amounts of govt subsidy available - none at all for the carseat.

So far, so banal. So this is not a reflective blog, it's a "service" entry.

Mind you, if I have time, there's a lot to think about that's not at all about disability equipment, but about life generally. Hey, no, that's not it, it's just about me me me (snort): colour, and a great discussion about why we've become too timid and afraid of it by an interior designer on "By Design"; colour and verve, and the Easton Pearson exhibition at the Gallery of Modern Art in Brisbane (not that I necessarily want to wear some of them, but would love to become the type of fabulous old lady who swishes into places in a yellow balloon of a dress and giant necklace, with attitude, brains, and a great haircut). Light and shadow and beauty and the "Floating Life" exhibition at GOMA.

Also, a visit from an old old friend - one of those friends you can NOT see for years, and then suddenly see each other and connect right back up without a second's delay. We met in 1985 at Uni. Bloody hell, that was a long time ago. She introduced me to the firmly-held-and-maintained idea that every girl at any time needs a pair of red shoes in her wardrobe. And I've stuck with that. A friend with firmly held views on the perfect teacup (thin porcelain, large, ideally with OTT floral pattern). A friend whose heart has been broken and life was shattered by some very bad behaviour by a bloke, but who hasn't lost her passion for life and enjoyment of the world. This is a friend who talked about being besieged in arguments with her ex, where she was so confronted by the awfulness and intensity of it, that she didn't know how she felt or what to say. Intelligent, articulate, emotionally together: but I completely get that, and the awful confusion of being a mass and a mess of feelings that you can't even express.

And if I had world enough and time, my dears, and if I was feeling properly brave, I'd talk about how agitated and irritated and trapped I felt by being contacted by an "ex" who wanted to puddle around in the past and get explanations from me. I wanted to keep it clean and clear, and even felt guilty for not explaining my life away to this Person, and pointed out how extremely happy I am with Abe and Morgaine and Clancy; and how very different my life is now, both with those I love, and as a parent of one child with a disability and another with a metabolic disorder. Oh, you make it sound so simple, he said.

You make it sound so simple.

What, in that one sentence version of my life, I thought, is even remotely simple. And then proceeded to be furious. Luckily, it cleared my head, and I didn't feel obliged to answer or justify myself or explain.

It did, once again, remind me of the vividness and pleasure and passion in my life. It reminded me why red lipstick, ideas, conversations, work and a collection of coloured wooden blocks really can be a fine thing.

It also reminded me that it's quite easy to delete emails.

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):

Things to Feel Guilty About: Or, gender, parenting, curses, diagnoses, time and every other berloody thing

When is a day in someone's backyard not merely a day in someone's backyard? Oh, that'd be when it can be overanalysed to within an inch of its life. Oops, to within a millimetre of its life, let's not forget the commitment to being metric. So. Spent a lovely day in a friend's backyard today: five women and nine children under the age of three. There was the requisite amount of sand, snot, water, crumbs, flies, breastmilk, formula, tea, trampolines, tears, corn, singing, running around, and confidences. Not too many meltdowns (none at all by the grown ups, I hasten to add), and only a few children-landing-on-their-heads. Days are getting hotter, so everyone has to be slathered with sunblock.

But last week, when we did this the first time, I suddently saw Clancy cutting loose more than he usually does. He's a sunny, outgoing, physical kid, but I realised I"d unwittingly been restricting and restraining him, because of M's disability, and because Abe and I are simply not used to a child who can move, zip around, crawl to anything, pull himself up on things, and just be off. Off and going. Off, as my dad used to say, Like a Packet of Prawns in the Sun. (Actually, he more often said, Off Like a Bride's Nightie, which is both oldfashioned and a bit suss, so I"m selective in the Australianisms I'm happy to perpetuate.) But here, in one day, he was rampaging more than he usually did with me. He was plonked into a wading pool, and sat in a sandpit, and he was tearing around gleefully on his chubby little knees around a huge backyard. OK, so part of it is that we don't have a backyard; but part of it is the way that I become tethered to Miz M, to her chair or to her lying on a blanket in the shade, because she can't move.

So what does this mean and how do I manage it? Sure, as Myff said to me, it will probably make him a better, more sensitive person; but if we're not careful it could also make him resentful, or restrict him, or overly careful, or forever being screeched at to Come Back Here Right Now Young Man (hopefully I won't be doing that, but hey, stranger things etc). I'm beginning to understand why there's so much agonising about siblings of children with disabilities - at the same time as I remain frustrated about the info that's not out there in relation to disability per se. (I'm well over it now, but I still remember the shock I felt in not being able to access any decent material that dealt with the question, "What the fuck do I do if I discover my child will never walk?" From wheelchairs to disabled parking permits, to educational support needs and standing frames, you just have to learn it as you go along. And way way way ahead of me, are all the years full of things we don't know, have to learn, may or may not miss.)

So back to the backyard. It struck me as both interesting and worth exploring; and as something else to feel guilty about.

So I was lying in bed the other night, listing all the things I could, and frequently do, feel guilty about. The gender aspects of this are hardly new. Abe thinks it's bonkers. Perhaps there's something constructive in there; perhaps it's a way of developing empathy; it can certainly be impetus to get things done. But at any moment, in any spare slot, I can shock myself into agonies of guilt over things like:

- We had respite for Miz M on Sunday, and took Clancy off with us to a collegial party thing with Abe's colleagues. Guilt? Were we hiding and denying our disabled child? What does this pattern mean? Guilt.

- Last time I spoke to one of my sisters I was rather crisp; and she can annoy me so much even that makes me feel guilty. Must call! Guilt.

- At any point of the week I know I should be doing more physio with Miz M. Little bits, often. There's always more "often" in any week. Guilt.

- Being fit, staying healthy, not falling in a heap, becomes ever more crucial. Not just the arse dropping and boobs disappearing, but would really like to be doing kickboxing again. Guilt.

- I have piles of books sitting next to my bed, reproachfully. I should be reading them. I should be writing reviews. I should at least be enjoying them. Guilt.

- Where the hell are all the receipts and have I done all the right bits and pieces for tax. Guilt.

- In order to be a good advocate for Miz M, in order to stay on top of disability politics and bureaucracy and technology and possibilities, I really should file that 3 m high stack of papers. Guilt.

- Oh bugger, it's been 8 years since I finished my PhD and there's not a manuscript or articles to be seen. Guilt.

- There's that woman I know who published a book about memory and popular culture and I promised to photograph these sewing diaries of my mother's for her. And it's now too late. Guilt.

- Ah, I was going to email my former best friend from school back, and never did. Guilt.

- We're supposed to be maximising M's communication and language potential, by constantly following the Hanen method of communication. Haven't been doing that enough. Guilt.

- Just remembered three elderly aunts I still haven't thanked for presents when M and C were born. Bad person undeserving of handicrafts and odd-looking knitted teddies. Guilt.

- Need to do follow up hassling re gastroenterologist, opthalmologist, Modified Barium Swallow Report, special school playgroup, and various other medical type thing for M. Haven't. Guilt.

- They still haven't given us proper access into M's childcare centre, courtesy of putting the new door in the wrong place so the ramp won't be at the right slope. Which is a pain in the arse. So I was asked to write to the CEO AGAIN and hassle them all AGAIN and that was three days ago and I haven't done it yet. Guilt.

- Am back at work two days a week and have not yet restructured entire workplace and written submission on thirteen different things. Why not? Guilt.

- Never did catch up with that very nice woman who asked to do so, before Easter, bugger bugger bugger. Guilt.

And fascinating as all this is, I really could just go on and on. Those three am moments. At least I did my tax. But there's always always always something.

Writing an indulgent post without fresh and thoughtful insights, or indeed a series of links: Guilt.