Ramping It Up: Children w disabilities, opinions, books

When the Wheel falls off the Wheelchair: Can you build a raft with a ramp?

I drove up to the Children's Hospital again this morning, but not for the usual reason. Morgaine is fine, and has been out of hospital for ten days now (twelve days in, five of them in Intensive Care) and was in the backseat giggling with her brother, who was wont to make a fuss. I was driving around in circles, trying to find a park near one of those places where parents from out of town can stay while their children are wrangled and poked and labelled and examined time and again. Finally, I just parked illegally and tried to make contact with this woman I'd never met before. A woman I had been put in contact with just last week, by The Therapy Place, as she was contemplating the same type of Special Needs Car Seat we have for Miz M. Fine, I said, give her my number; happy to talk. 

Happy may not be the right word for it. 

By the end of that phone conversation, I realised she needed something much more than I could provide. She needed a whole network and professional advice; she needed money; she needed decent equipment; she needed a partner who hadn't upped and left in the face of their daughter's disorder; she needed medical advice; she needed not to live so far away; she needed help with a child who makes M look strong in comparison. Miz M can now hold her head up for 15 seconds at a time sometimes. I'd been celebrating that, and then realised it was a tiny tiny incremental shift and still didn't compare with any usual range of "normal". Well, this girl can't hold her head up at all. So fragile; so lacking in strength; so terribly in need of modified equipment.

But I turned up, and showed her what we had and how it worked. The footpath was beginning to vibrate under my feet with her level of stress. It wasn't so much that she was about to cry - eyes fill with tears regularly in this world of ours - as that she was about to disintegrate before my eyes. Bits of her were spitting out and edging apart at the seams, for lack of knowing what to do next. She'd clearly pinned some hope on me turning up with a solution . . . but it's not quite right. I suggested she contact Technical Aid for the Disabled, to see if they could do the modifications for her, but the despair hardly allowed her to know where to begin. And she hadn't heard of many of the organisations or possibilities or lobbying or hustling out there.

And then one of the wheels fell off her daughter's wheelchair. She nearly lost it. What if we'd been going down that hill; why didn't they fix it yesterday; I'm going to raise hell with someone very soon. I hope she raises hell with the right place, rather than spitting fire indiscriminately.

This woman needs the National Disability Insurance Scheme - and, I'd suggest, a good organisational support structure that could ask some of the questions she doesn't yet know to ask.

And then here's my ethical dilemma: the question of breeching trust. I contacted the head of the social work section of the Therapy Place, and left a message saying that I thought this woman needed more help. Urgently. Partly, I know what she needs is a friend to debrief with, a person in a similar situation to talk to, and I don't think I can be that person. I don't want to be that person - there's the selfish bit. I recognise the jangly need; the awfulness of not getting answers; the perplexity of not knowing how to ask the right questions . . . but I know my strategies are different. But I also know I'm not alone the way she is. On any cold night, in any moment of frustration and fear and anger I not only have Abe who wraps himself around me, who I can and do turn to; I have a liferaft of friends. A liferaft, not just a raft. 

This woman needs a raft. With an outboard motor, and maybe a little house built on top of it, filled with cups of tea, books, and a computer filled with useful bookmarks. And either a how-to guide or a flat pack version of it, that she can build for herself. How's that for an overworked Ikea-ish metaphor.

Your Daughter? That's My Worst Nightmare

If only I could write like Hilary Mantel - whose wrenching, angry, memoir Giving Up the Ghost made me laugh out loud, or snort and snuffle into the lounge to the surprise of both Abe and Clancy. Because she's intelligent, because she's a good researcher, because she's articulate, doctors spent a lot of time being surprised by her and, because it's the late 1960s and early 1970s, they pathologise her rigour and turn it into psychosis. One doctor tells her she's conscienscious, with a mind for detail, in a mildly accusatory way. She was studying law, and so goes on to say, "I tried to imagine the other kind of law student, the kind who favoured the broad-brush approach, who took on the law of trusts, for example, with a grand generalist's sweep and dash." Well, it made me laugh.

I also loved this, when being treated appallingly by dickhead lecturers at university, who couldn't see why a woman should be studying law at all: "Some people have forgetten, or never known, why we needed the feminist movement so badly. This was why: so that some talentless prat in a nylon shirt couldn't patronise you, while around you the spotty boys smirked and giggled, trying to worm into his favour . . . It was assumed that marriage was the beginning of a woman's affective life, and the end of her mental life." (pp 160-161) And goes on to describe how, in job interviews, you were grilled about marriage, intentions, when you were going to "start a family", by "some grizzled ringmaster, shifty and semi-embarrassed as he asked a girl half his age to tell him about her sex life and account for her next ovulation." But really, it's  one of the best descriptions of pain and illness and misdiagnosis I've ever read. I had thought that both Joan Didion and Susan Sontag, even David Rieff, talked about illness and hospitals and the medical system well but, really, Mantel takes the cake by describing this ostensibly sweet self who was raging and railing and almost screaming with frustration inside a body that was going out of control. But then again, maybe I only think that because I finished reading it in the last few days, so it has inhabited my imagination.

That, and Colum McCann's Let the Great World Spin - vibrant, clever, convoluted, sad, utterly gripping. In some ways, a novel about grief (I wept through one entire chapter; then was buoyed up the hard edge and street rhythm of the next, which left me surprised at the left-over sniffling); in others it has the euphoric poetry of Philippe Pettit's tightrope walk between the Twin Towers balanced over everything, turning your eyes and the character's eyes up and up. Then some cringeworthy moments of race politics where you can hardly look at the page. Still, it helps to have seen the doco Man on Wire, about that tightrope walk, to give you Pettit's arrogance and his poetic hopes, given that he walks in and out of the novel. Must go and find some more words by McCann, because this Irish-American storytelling was really something.

And on the whole entertainment thing, I've also managed to see two films (ta-da) and start a few other novels. Saw Jane Campion's Bright Star which was so beautifully framed and gorgeous to look at, and wasn't Abby Cornish fabulous, sweetie? And the opening scene, full of laundry and washing lines, like elegant birds in the landscape, made it a very domesticated, women's film, without being a conventional Chick Flick (which is a dopey term, but hey). For a story about a relationship with a male poet, it was so covered in cloth and held together by handstitching, with views below stairs and in the kitchen, so that the work of capital-R romance was on display. No "Elven Grot" for Keats' rather more earthy Lady of Shallot, rather a house that had to be rented and walls that were a little thin. Given that nothing much happened, it still held me . . . and of course, wept through the last bit, and emerged from the cinema with mad hair and a red nose, in the middle of a hot sunny day, and had to slink down the street without a tissue, feeling rather tenderised.

And then saw Avatar in 3D (on the "now for something completely different" stakes). It was so completely and utterly "filmic": a huge spectacle, roaring over your head and leaping right into your face. And yes, some ooga-booga spirituality and none-too-subtle colonialism versus the pure indigenous hearts and minds. But what a beautifully imagined world, with lovely detail. Am still wondering, though, what to make of the soldier with a disability at the centre of it: there he is, being self-sufficient and capable, and seems to have enough ramps and access points to get around in; yes, we see him being discriminated against by some macho marine pratts, but he doesn't give a shit; and the promise is held out to him that, if he could afford it, he could get working legs back again. So, is this the future? And then there's the project he's working on, where he has a "conventional/ unconventional" body by inhabiting this alien avatar. He first disappears into this pod, this terrible claustrophobic space that keeps him still and make him terribly vulnerable (exposing both him, and a central plot problem; that, and what happens when his alien self is asleep. Lucky there weren't any little alien babies nearby or he would have been in big trouble for sleeping through). His broken/ disabled body is left behind; he stands up and walks and runs and exalts in the physicality of his new alien body, that can not only stand up, it can leap, almost fly. He's remembering old sensations. Get up out of your wheelchair, my child, and walk. What if he'd been a kid who never could walk, who had to learn afresh: would he have enjoyed it as much? Must the disabled body always be positioned as something that's "wrong", so that even living virtually, while isolated in a pod, where "at least" he can walk is better than living in a new way in his own body. With all that military technology, you'd think he could have a pretty fine chair. I really want to know what the properly thought through disability activists and theorists think of this one. I don't really know what to think. A few links here, including a man who says hey, we don't all necessarily long to be "fixed".

But here's the link back to a non-alien, non-green-and-scaley skinned ordinary life. What if the person in the wheelchair is imagined not as a person - or a child - but rather as the worst possible scenario, the "nightmare"?

We live next door to a very nice, very social, couple. Two women who talk and laugh loudly, and know how to throw a generous party, with a bottle of champagne or 50, and everyone invited. So just before Christmas, I wandered over, leaving Abe (who wasn't in the mood) at home with the babes. There were lots of people who I'd seen in the street but not properly met. Often glimpsed as we all head off to work, or wrestle stuff into cars, or chase dogs down the street, or do 85 point turns (me) in a very narrow street with bugger-all parking. A young couple were there, pregnant with their first child. Young Professionals, who I didn't find wildly interesting, but I threw back too many glasses of sharp cold white wine and became all wide-eyed and overly-enthusiastic about everything (sigh, must grow out of that). So we talked about the baby, and the guy said things about how they were having one who'd be all dressed in frills and pink, making me grind my teeth with irritation, but really - perfectly nice, all very bland and middle class, everyone well educated and had read the right books on pregnancy and health. I'm not into giving out unwanted advice, or pretending I know how to do things. I did say they should yell if feeling overwhelmed, just on the basis that the snot/ green baby shit/ weird behavious might be reassuringly familiar.

So we talked about pregnancy, and health, and labour, and I did say that yes, with Miz M, it was a healthy pregnancy, full term baby, no known problems, and yet yes the mysterious, severe, disability happened anyway, and here's our lovely girl, likely to never walk or sit, may or may not ever talk, will need us forever.

Disability.

"That's my worst nightmare", he said. I was a little bit pissed so didn't get at all offended or upset, and just did my usual, "Oh well, you just cope with what you cope with, don't you" routine. But really, my daughter is your worst nightmare? Full marks on the subtlety stakes, I say.

And it had been a week of it. Not long before that, Abe and I had actually managed An Event without children. We organised a babysitter, and went out to a Christmas drinks thing for Abe's work, full of medicos and scientists and heirarchies like I'm not at all used to. Standing around on a lovely verandah with a view over the city and (again) very nice wine, and met some interesting and not so interesting people. A fabulous young woman who was a paediatrician and very funny, who pointed out a very senior guy she worked with, and that she'd always thought he looked as though he should be wearing a puffy shirt and being one of the three musketeers. It was D'Artagnan at thirty paces from then on. A man who ran a branch of an airline, but clearly didn't read the papers, which was odd. And a woman who told me she was a physiotherapists before she retired, and worked with people with disabilities. "Physios are terrific," I said, startling her with my conviction. So I had to explain why, and told her about Miz M's work with therapists . . . and then, in another act of great subtlety, she told me how her children used to be mortified when she'd be out with them and she'd see a client and go to say hello. "Mum", her kids would say, "why do you always have to go talk to the people in wheelchairs with pasta stuck to their foreheads". Oh ho ho ho and Merry Christmas to you, too, good to see there's a laugh to be had there too . . .

Orientation, North; Blog Carnivals; airports & Museums

It's hot; Morgaine's wheelchair/ mobility device has just been repaired; the plumber has fixed the broken loo; four cartons of thickened water and associated paraphernalie has arrived; my new freestanding punching bag has just been delivered; and Clancy is asleep. It's 11.15 am. There's ragu simmering on the stove, and I have a mental list as long as the meandering pile of crap on the loungeroom floor. Let's see what else I can get done, because hey, it's been a month.

In that time, the latest Feminist Blog Carnival, on disability, care, age, Lesbian Vampire Films and a whole range of related issues has gone up and, as always, stacks of good things to read and much admiration to the woman who put it together. I'm looking forward to having a bit more time and space in my life down the track, so I can host one myself and help share the organisational load, etc, but - well - not right now.

There's also more happening on the proposed National Disability Insurance Scheme, with a Productivity Commission report just announced.

Meanwhile, even though I'm no fan of the whole patriotic fervour associated with the Kokoda Track in PNG, I understood the frustration felt by paralympian Kurt Fearnley - who'd just crawled the Track - when he found that he couldn't use his wheelchair at the airport. Y'see, we just took Morgaine on a plane for the first time, to Cairns, partly to finish our aborted Northern adventure and partly to defiantly decide that we wouldn't be limited by too many ideas of what we couldn't do with her, where we couldn't go and so on. To be fair, we had an OK time of it - but fucking hell, the hoops and barriers and reinventing of the wheel that goes on.

First, you have to deal with the endless gatekeepers, when you try to find out just what the system is for taking mobility aids and needing supportive seating on the plane. And each person has slightly different, inconsistent, info. Won't go into the long boring details, but anyway, finally discovered that you contact the "Special Handling" section of the airline, and give them all the details: size, weight, condition, supporting documents. You check the seating availability, and what you can use. Give height, weight, dimensions of the mobility device. Check with the Civil Aviaiton Safety Authority about what's what. Read all the airline policy. Make many phonecalls, and write long emails. Think you know what's what.

Then arrive at the airport, and no one at the desk knows anything about it. You have to hand it to those lads from Little Britain, it all feels very "computer says no". Still, we did ok. After some fairly firm, but smiling and being LOVELY interactions, we made sure they tagged her chair, and that we took it all the way to the gate. Then, because she can't actually sit in any of the wheelchairs they make available at airports or for transfers on planes, we had to carry her on, struggle with the car seat, balance a wiggling Clancy, and try a bit of om-style deep breathing. Then hope like hell they were able to bring it up to the gate at the other end. And they did and it was fine. Clearly, no matter how well organised, you just have to reinvent the wheel, do the explanations, go through everything, and try to decide how to not piss anybody off . . . each and every bloody time. And I reckon Fearnley has been doing that all his life now, and just got a bit sick of it. Ah, but aren't they the unwritten rules? Be grateful, be charming, be good humoured, don't make a fuss, don't go to the media . . . and know that the next time it could be easy or a nightmare and there's no way at all of knowing.

It's still hot. I'm still feeling the press of all the things I need to do against the back of my neck.

I've bored myself with the travel logistics stuff.

Would rather be talking about the wet, green, strange and beautiful North. The Daintree. The Reef. Cape Tribulation. Atherton Tablelands and Mareeba. And if I knew where I'd put my notebook I'd be better able to do that: from Cook and myths of origins to the way some of these local museums turn you into an instant curator . . . I think I'll need to do all that another time. When it's not so hot.

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.

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.