Ramping It Up: Children w disabilities, opinions, books

Writer in Residence at a Hospital

I'm no great fan of Alain de Botton, but when I heard him on the radio reading from his recent work that came from being a writer in residence at an airport, yes I was inspired. It wasn't the writing, so much as the idea. At an airport, of course, he got to see it all: drama, passion, reunions, farewells, lost luggage, bad behaviour, exemplary behaviour, all sorts of cultures and nationalities - and, perhaps, architecture and a space that's sometimes stateless sometimes all about citizenship, sometimes cozy sometimes cold, and frequently defined by ridiculously expensive mediocre coffee. But the thing that got me, was the idea of institutions and writers in residence.

Where else could you have writers in residence, and what would their stories be?

Of course, lost of institutions have already done this. Libraries. Schools. Prisons. Art Galleries. Universities. But imagine what would happen if you kept expanding it. Imagine the skills required: not just to write, but to listen, to elicit, to empathise, and maybe to confront. Writer in residence at a funeral home. Writer in residence at a laundromat. At a hardware store. At one of those dreadful baby shops full of cute furniture and anxious new parents. At a shoeshop. At an aged care facility. At a petrol station and roadhouse in the middle of nowhere.

At a hospital. At a children's hospital.

It's not news that hospitals are full of dramas. ER. All Saints. Scrubs. General Hospital. Grey's Anatomy. But the delicacy of telling the real stories and being a writer whose job it is to gather those stories? How would you do it? And how on earth would you do it ethically? I can imagine the writer sitting for days by a bedside, needing to be part of the action, needing to feel the energy and flows and stories that swirl around. Feeling the anxiety and tears and warmth.

Because, OMG as they say, the stories.

Morgaine has been out of hospital now since 26 July. Not quite two months. And I've been off work on LWOP for most of that time - which seems odd, given that after the crazy six months of endless hospital admissions, she's fine now. For the moment. It's increased my anxiety and guilt in some ways, rather than lessened it, as I feel that I'm waiting for the next crisis. It may happen next week, or it may not happen until next year. Stasis. Limbo. But time to reflect.

Time to remember some of those many many hospital stays - and the people, and their stories. There was one particularly intense ten or twelve day period, when M was admitted under the neurology team, because as well as her usual respiratory distress, she'd had seizures as well. So we were in a different ward. The room wasn't particularly big, but there were six beds, and six recliner-chairs for the parents. All in a row, all right next to each other, with a strange intimacy and a carefully practiced set of rituals around listening and not-listening. We all made an effort to let the others be private, but were also ready to leap in when required. We couldn't help but know each other's stories.

The small boy in the next bed had a terminal cancer and a set of zippered-looking scars all over his head. They were on holidays from interstate, when he suddenly got very sick. The parents were delighted with the care and treatment he received at this hospital, the progress made, but there was an undercurrent between them. The father was utterly dedicated to his son, with an air of zealousness that I suspect we all get when our children have complex health problems and no easy answers. He'd latched onto an alternative food regime that he was convinced of, that meant this child was being fed only protein. Nothing else. The father made up all his food, and the mother was weary and resigned. The doctor's didn't think it was a good idea, and I don't think she did either. And the little boy was offered some toast one day, by one of the wardies, and the poor child was delighted. It was taken off him. Those wardies are the ones you might follow, if you were the writer in residence, as their everyday activities create the connections between people. Emptying the bins, collecting the trays, endlessly mopping the floors and saying hello to the crumpled, stiff necked, parents, and the wide-eyed children.

Across in the next corner was a 15 year old girl who'd had major brain surgery, and was peg fed. Her mother was constantly on call and never seemed able to even take a deep breath on her own. If she walked to the corner to rinse out the attachment for feeding, the girl would start calling out, anxious and demanding, peevish, annoyed. Where were you where were you I can't see you. Both had masses of dark wavy hair, but the girl's was shaved on one side. That woman was doing it tough. One day she called her ex, to explain yet more surgery, another procedure, another in a long list of dramas, and as we all pretended or tried to close our ears, there was clearly a complete meltdown going down on the other end of the phone, of the Why Didn't You tell Me I have a Right to Know. Just calm down, she kept saying, let me tell you, it happened so fast, just calm down. And on and on and on. She was curled in on herself, her and her child, didn't really speak to anyone else, and had a pretective air. She seemed so private I didn't speak to her when we finally left, a week later or however long it was, and then there she was, standing up in the corner, waving, wishing us all the best.

And right in the middle of another night, a thin woman came in from the Intensive Care Unit, with her 9 month old baby connected to more tubes and wires and shunts and ivs than I've ever seen. They had had to lift off the entire top of his skull, and cut open the bones which were fused together, not allowing space for his brain to grow. He had a helmet of bandages that made his head seem huge, and his eyes were black and swollen. She was breastfeeding him, and all he wanted was to be held, to feed, to be given pain relief. Her husband and two sons came down with a horrible flu and couldn't come in to see her, and they were from hundreds of kms away, staying in hospital accommodation. Then, within a day or two, this fragile child sat up, smiled, looked around, was ready to play.

Directly opposite, was a young Samoan girl, only about ten years old but looking older, which meant everyone thought she was able to cope more than she could. Her leg had been broken and reset with pins, and was now encased in a series of metal halos and wires, that meant she had to go through many complicated manouvres to get in and out of bed. To be hoisted into a wheelchair. To try to go to the loo. How do I put my undies on, she said to the nurses? A conversation about sewing and velcro ensued, and whether her nanna could maybe fix that for her. A young and utterly gorgeous mother, with another little baby, in and out by her bedside. Lots of visitors and laughing aunties and grandmothers. Then they all went out one night, and took longer to come back than she expected. Sobbing from her bed. I've never been on my own before, she said. So I called them up on my mobile, to find out where they were and when they'd be back. They thought I was a nurse so there was lots of confusion, and of course we were all best friends after that.

And in the other corner? A young Aboriginal woman with a tiny beautiful baby who was having breathing problems. Her team was by her side - literally her team, a whole group of young women in uniforms, with the Aboriginal flag and an air or protectiveness. Stories of custody and access. Lots of laughing. Conspiratorial intense phonecalls. Someone wasn't going to be let into the bedside.

Everyone offered each other fruit, or leftover sandwiches. Magazines full of mind-numbingly tedious glamourpusses in red dresses and push-up bras. I'm going down to the cafe do you want anything. Keeping track of the many teams of doctors who flitted in and out, never leaving any clear sign that they'd ever been there.

And sleeping in a reclining chair that doesn't quite recline properly, with a foot jammed against the bottom to stop yourself being concertina'd back like a cartoon cat in a booby-trapped house. Cameraderie and strangeness.

Then the boy with the protein was able to go home, and another woman came in. She had the final space, right next to the bin and the front door. There were visitors everywhere, and chaos. My girl was moaning a lot, less than a metre from her child'd bed. She rejected any overtures of friendliness. Her daughter had fallen off a piece of playground equipment and broke her arm - awful, of course, and distressing, but if there's a heirarchy of these things, it didn't really compare to the brain surgeries and terminal illnesses and touch-and-go situation of the rest of the room.

This woman looked around.

But We Are Private Patients, Don't We Get a Private Room?

This is a public hospital, m'dear, said the formidable nurse. In these situations, they're all Formidable. Beds are allocated according to need.

Her body language froze with distaste, and she then spent an entire night listening to my girl moan unhappily (a sure sign she was getting better, but not that much fun for everyone else), with lights flashing in her face from the nurse's station, and with the tap going off and on as everyone paid attention to best handwashing practices. Part of me wanted to laugh - this woman was getting the Public Hospital from Hell experience, just as she expected.

So if I was writer in residence for that ward, that'd be the comic relief.

Falling off the blogosphere: And Gastrostomy insertion

I seem to have fallen off the blogosphere recently for no very good reason, although it includes an overdeveloped sense of guilt. Am struggling with the fact I have a work meeting this morning that means I'll leave from home, so have decided that the 20 minutes before 9 am can be used for "me", but no more.

Miz Morganise finally had her gastrostomy/ PEG insertion two weeks ago today. As always, it took considerably hustling and being a pain-in-the-arse to the hospital, all of which paid off. Whiel being determindedly "Lovely", I kept calling to see if they'd scheduled the operation, as I knew she'd been categorised as urgent in late November, but there'd been a hiaitus over Christmas. So by presenting myself as persistent but friendly, and ever so slightly implacable, meant that when other people cancelled, we got a last-minute "how about next week" call.

So, to recap: a gastrostomy is a tube and "button" that goes directly into the stomach and means M can be administered food or fluids more easily. We'd spent six months putting a naso-gastric tube down every morning, to give her water, as her "delayed swallow" and low strength means that ordinary water moves too fast in her mouth, with a risk of aspiration, and drinking thickened water is a slow process. This way, she was properly hydrated - happier - and a bit stronger. But sticking an NG tube down your child's throat is no fun. It's also not as hideously hard as it sounds either, or not with a child as easy going and low-tone as Miz M, but it's no picnic. It makes my nostrils twitch just thinking about it.

So the PEG will be a great long-term solution, although again any visit to the Children's Hospital, with a General Anaesthetic and post-operative pain is a bit of a trial. And the fasting, with a wee girl who simply cannot understand why she's not being fed: aaargh! And then in finding the right position for the PEG, they had to have two gos, so there was an extra puncture mark, and they had to hold off feeding her for another 24 hours. Thirty six hours without food and drink, when you're not quite three, don't know what's going on, and have pain in your tummy from an op . . . had me reaching for all the platitudes. If only I could take the pain and deal with it myself. If only I could somehow transfer and absorb it.

Then again, as always, the Children's hospital is an extended exercise in being grateful, lucky, and sobered by events. The baby screaming in the middle of the night. The pre-raphaelite beauty in the next bed, only 11 years old, with a mystery infection that had her pale and limp, but with a raging tempreature, and a whole "barrage of tests" as they say. And very nice parents, who'd spent a week livng and sleepign by her side. Luckily, it was sorted while I was there.

So M came home with her new PEG, but with a long tube attached, which'll be replaced in 3 months time with the permanent, discreet version. Meanwhile, ther's a rosette of plastic and a 30 cm tube poking out from just under her ribs, requiring ingenuity and the sewing of buttons and loops of elastic to her clothes. And just when Clancy had worked out how to sit and roll on top of her like a puppy, without biting, in a way that made her laugh with pleasure. So now we're having to keep them apart in case he pulls at the tube, which worries me in terms of the message we're giving both of them. But hey, it'll all be fine.

The odd thing about the hospital visit though, was the combination of being bored and distracted that happens. I took along the Peter Carey novel, Parrot and Olivier in America, which I know I'll just love. It seems to be a bit more like Illywacker in style, which is my fave of his. But no, I couldn't immerse myself in it as machines beeped etc. So just in case, I took along my cheapo, lolly-pink, portable DVD player I'd bought in the hope of doing more yoga and boxing workouts in the shed (which I've managed about 5 times so far, but here's hoping), and a set of the HBO series "True Blood" that I'd been given for Christmas. Well. My oh my. Funny and clever and just the ticket, although sitting by your sleeping child's bedside holding her hand while watching an erotic and explicit, blood filled scene of vampire sex, when a nurse comes up behind you to ask some question or other that I missed because of earphones, is a bit bizarre.

Oh look, four minutes to go before I switch to conscienscious mode, so what else: still reading Hilary Mantel's Place of Greater Safety on the French Revolution, which I'm loving but is taking me forever; read 2/3 of Mary Beard's Don's Life (in book form, not the blog) last night, and was completely engaged; just loved Colm McCann's Let the Great World Spin, but perhaps I already mentioned that.

And am also in a dilemma about an elderly neighbour who I've befriended and/or adopted. She's Italian, and her English is very bad. She's desparately lonely, so I was happy to invite her in and chat to her, and in some ways she's pretty easy going. But she's started to come around every day, and it's a bit exhausting. Even more, she frames her life entirely in terms of hardship, negativity, work and thigns being difficult. I'm not suggesting it hasn't been tough, but the answer to everything is "ver hard, work very hard", not just about herself but about me. If I say what I've done, she'll say, "Oooh, it's so hard for Mama", and I simply cannot and will not frame my life as a negative grind or a tragedy. So I worry that it's just the lefty soft part of me that's doing this, and wonder whether I'd be quite as forgiving if she was an old Anglo woman. Am I being suckered into the Romance of the Migrant Story? But there are also things I quite like about it, and I'm more than happy to explain why the letter she got from the govt is ok, and doesn't mean she's in trouble, to pick up things for her, to give her a glass of wine on the lounge. But I'm goign to ask some Italian speaking friends for some words to throw into the conversation, to try to explain why I need to be strong, resilient, positive, happy. I tried to ask her yesterday when she'd been most happy in her life, what made her happy, and she just said, "I no ounderstand", and I don't think it was just the language. A reminder, instead, about the different way lives are lived and understood.

Ooops, two minutes past 9, the guilt clock is ticking. Better go.

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.

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

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

And whadayaknow it came up today.

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

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

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

I Don't Know How to Be Happy.

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

This rocked me back on my heels.

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

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

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

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

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

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

Somebody Else's Dark Days

It's almost 3 pm and I have so much to do my head should be spinning. The usual - everything from paperwork to taxes to sorting out drawers and dealing with boxes of archival research; tidying up domestic detritus and cooking; catching up with old friends and nurturing new ones; tracking down a novel or two; applying for funding and filing life's administration. The usual, in other words. So I shouldn't be having an indulgent chat to a computer screen. So, knowing that I have about half an hour's grace before urgency kicks in once again, I thought I'd check emails, flick into news sites, check some other media sites, and see what's what in various blogs.

And then I read this: another parent's dark dark days of despair, as he deals with his daughter's seizures and epilepsy and huge amounts of medication. The blog is called Looky daddy, and I don't read it all the time. He manages to be funny and real and thoughtful, and only occasionally too folksy for me. I like his style, and the range of stuff he brings up. But today? A whole list and litany of "I'm fucking sick of it". Sick of having to monitor his daughter; sick of the medication; sick of the side effects. All of this is heartbreaking, really, because it's the relentlessness of it that he manages to get across in a few hundred words. But the thing that really got me? He didn't want to allow the space for comments . . . and I fear it's because he doesn't want to deal with other people's judgment of him, other people's righteousness, other people telling him he really needs to get over it. In which case being reminded that it's an unforgivingly self-righteous and judgmental world out there is too too awful. Unless, of course, he just doesn't want to deal with other people telling him it'll be ok, and he should just buck up, and there are worse things, and look at how lucky/ happy/ resilient he really is. And in fact he demonstrates regularly that he and his whole extended network, and his daughter, are extraoardinarily resilient. But ah but oh the rawness that he revealed, just by adding that caveat at the end.

So I wonder when and if and how I'll get to that stage with my girl? Will I get sick of always having to pick her up and place her, and her never being able to sit or stand or lean or be anywhere unaided? Will I be worn down by the extra effort to communicate, by the rounds of therapy, by the MRIs that don't show anything? By the heavy equipment and the endless straps and buckles and chest straps and headrests? By having to explain at every turn what's going on with her? by having to mediate social interactions and work for inclusion? By having to look out and plan ahead for access and ramps and width of pavements and doorways?

Or will it just be ok, and be what we do?

Maybe she will talk; maybe she will one day be able to sit up unaided. I know it's too much to think she'll walk.

And I don't feel Looky Daddy's despair and frustration and sheer tiredness: but is it just a matter of time? My girl is 2 years old. His daughter is eight. Then again, he has to battle with damaging, draining, emotional "events", where she has seizures and they have to run off to the hospital. Maybe it's the intensity of the moment - the moment of danger, that flashes up (who said that? some cultural theorist or other) and reveals so much to us - maybe that's what does it for him?

And I think it no accident that he was worn down by an article in a magazine, by somebody else's statistics, presented so baldly. They can really kick you in the teeth, sometimes, with the way they present a "truth" to the world, from mortality of children to the mortality of relationships. Hey, I work in the media so I know there aren't (necessarily) overly elaborate conspiracies; I know research and editorial decision making and interviews can be (should be) complex. But sometimes - sheesh - you need another article on "disability" or (in his case) "epilepsy" like you need a hole in the head. Reductive and expansive at the same time: your experience fits into this model; and then at the same time you read a whole range of other peoples' experiences and expand your world to fit theirs in. To draw connections. To wonder if it'll happen to you. So for me, it's all the bloody awful articles on "carers" or (as I've said six too many times already) "angelic carers" that really piss me off. Or the throw away line about the child with the disability, about the institution, about the elderly parents in despair, about the vulnerability of the child, about the use of the word "retard" as slang, that gets me.

Or the thought of someone else out there, at their desk, on the other side of the world, writing his innermost thoughts for strangers. I wonder just how much he leaves out?

Left Handed Screwdriver Operators

I seem to be getting here less and less. Writing has been reduced to "status lines" on facebook, a veritable part-haiku of experience, encapsulated. Abe was away for almost a fortnight, so those part haikus were even more abbreviated than usual. If only I knew the name of more poetry forms: a hai? a ku? When one would like to have time for a stanza or a sonnet, while on some days nothing less than an Epic would do. While Childe Roland is in the tower etc, and young Morgaine is in her Wheeled Chariot. Although I refuse to completely surrender to the notion that the pram - or the mobility device - in the hall is the complete enemy of art.

Although the small stirring from Clancy that I hear from the other room right now may well abbreviate all this to much less than a rhyming couplet. Ah, no, he's wiggled himself back into a sweaty snooze.

But apart from overly pushing the poetry metaphor, have been thinking a lot about language and vividness and language and identity over the last week or so. Immediately, that's because I got off the phone to Auntie Dulce, 80 years old and recently had a "funny turn", that may or may not have been a stroke. It turns out it was a form of "vertigo". She told me that she coped with the MRI by breaking down the sounds into different things: that was a galloping horse, that was something else. And then, as so often, we got onto work, the working classes, apprenticeships, opportunities, The Government, and why the Australian Apprenticeship System (yes, she often speaks in a Capitalised Way) is terrific and needs expansion. A boy she knew - well, really, she knew his mother; and he wasn't so much a boy as in his 50s - went to work in the US, where the problem was people who'd been trained as "left handed screwdriver operators" and that was ll they could do, so if they lost their jobs they were in strife.

Oops, Clancy definitely awake.

Back to the disability-communication-course and its debates as soon as I can. Maybe. Hopefully today.

Two hours later, and not at all far away: Back. There are of course many other things I should be doing.

Language, communication, identity and all that - that's what I've been thinking about, a lot, over the last few weeks. Last week I once again headed off to the "It Takes Two To Talk" course I'm doing, all for children who aren't yet verbal; all children with disabilities; wide variety of disabilities; five parents (oh yes, what do you know, all mothers), in one room with two speech pathologists. One of the speechies is quite qa good facilitator and presenter; the other isn't so great at it (and the bitchy comment: a rather high and squeaky upward inflexion on a speech pathologist . . .does that show a certain lack of reflexivity?). We had to identify the communication style and stage of our child, and while I've spent quite a long time seeing Morgaine as a child who's sociable, and who communicates with the world with her eyes, her smiles, her soft gentle gestures, her way of moving her feet against the floor with pleasure . . . having an actual measureable schema showed me that she really is in the earliest stage of language development, what they call an "Explorer". (Then there's the "Communicator"; the "single word user"; and those who are building sentences.)

So that, of course, was a tad confronting - but there is stuff to build on.

But just to keep the "I'm lucky" narrative going, at least I"m interspersing this course with the art therapy/ CBT/ mindfulness course I'm doing as well. (This is not the course, but I found a link that explores connections between mindfulness and CBT - looking for a good overview that plays more as an "honest broker" but haven't managed that yet.

Because near the end of last week's language course, we were given activities to do, things to build on, using gestures, body language, "turn taking", blah de blah. Then at the end of it, the suggestion was that we break down our own language and simplify it, so that rather than saying "Put the shoe on", it becomes an exagerated pantomime of "Shoe!! On!!"

Meanwhile, the woman to my left was beginning to simmer. Thin and very striking, all pale skin and cheekbones, intense dark eyes, and an agitation born of having a child with a mysterious condition. And then she erupted. I have a real problem with that, she said, and launched into an impassioned critique of dumbing down the language, why we're underestimating the intelligence and potential of our children, that she objects to language being used like this, and what are we doing to our children by allowing them to be put into a box like this. And her voice cracked, as she pleaded with us to know if anyone else felt like this. Two of the other women laughed slightly nervously. I had to tell her I knew exactly what she meant, at the same time as I could see why - instrumentally - some of these techniques might be useful. Because this hope, this potential, this wanting your child to understand you and to know what's going on, to hold onto the idea that they might know a lot more than they can express, is so important.

It also, I think, ties into some slightly romantic, but equally heartfelt and true, beliefs about the power of art, words, literature, creativity and expression to change the world. And it's no accident that this woman is a high school English teacher. And those of us with a stake in language and identity tend to not only be confronted by this, but have to express it; while at the same time we live in a wordy world, where you hav to ask for, demand, advocate, request, verabalise, write, state who you are and why you need to be understood taken seriously LISTENED TO in so many ways.

There are the grammars of opportunity as well as of engagement. The language of toys and games of opening and shutting and reaching for and understanding and knowing about cause and effect.

And our children may or may not be getting that.

But this woman had no real space available to express that. I'd spent the previous day with other women with parents with a whole range of often heartbreaking disabilities, but in this terribly positive well organised space we were able to deal with the emotional side of our concerns; and with my friends - Myff, especially - and my man Abe, I can try to carve out an intellectual space for coming to grips with this. But she had nowhere to look except at a child who could make some sounds; who could copy her by banging on his tray table; who could hold matching pairs of plastic animals and move them around the house. And rather poignantly, I realised how thrilled I'd be if Morgaine could or would consistently imitate me even by banging on the tray of her special chair.

And then the language course ended, with no resolution or real way of addressing the identity question. It's predicated on the knowledge that language matters; but doesn't know what to do with how confronting that may be for those of with children Who May Never Speak. And will we interpret them back to the world, forever? Will we get it right, or do wishful thinking? Become those people who write entire books for their children via a sideways glance that is understood to mean, "And of course the architecture of this room is impeding my sense of self", which others answer with a pitiful sideways glance towards the parents that is understood to mean, "Oh she's kidding herself entirely". The course also ended, for that week at least, rather abruptly. I hurl myself out  the door with Clancy cooing in my arms (where he's been flirting with various therapy aids while we talk about his sister); and I have to drive for almost an hour back to pick up M from childcare. No chance to debrief; stuck for many minutes behind a bus advertising the Therapy Place that's been working with disability for 75 years; listening to Elvis Costello and trying determinedly not to get in a flap and trusting that I'll get there in time.

Whereas the Art Therapy has a moment of transition between the Disability World and the Rest. We talk about our art work; we do a meditation thing. Last week, we had to represent ourselves, metaphorically. Lordy lordy that was hard. I wanted something that showed colour and movement, although it occurred to me that I often seem calm on the outside. Others were needing to represent something much more fraught and distressing, and as I hear their stories am struck again and again by how wound up some of them are. But no, I don't think it's an exercise in extravagent Schadenfreude, although it's certainly a more realistic version of compassion. I don't realy know what you're going through, but I have a different sense of what it might be. So I keep thinking about the woman who, in one exercise, had a figure (herself) off to the side all scribbly energy and wool coming undone, being forced apart by all these demands and figures and crowded strokes of colour. A lot of murky grey on the page.

All I could come up for myself was a dancer - who I then expanded, so that she was juggling, and on a tightrope.

Perhaps, given that I'm supposed to be working on all the non-verbal cues that Morgaine gives me, I should have drawn in her lovely blue eyes looking up at me, her soft soft arms with their languid movements and energy raising slightly towards me. Sitting in her mobility device, thoughtfully chewing on the chest strap.

Is twice a week too much to hope for?

Surely, to maintain a blog, I should be posting at least twice a week. Is that too much to ask for? Perhaps as Clancy gets older, I'll have more than there snatched moments. Or is that just some terrible excuse? anyway, enough of that.

Just had a morning that made me feel 12 or 13 years old again. Went to the park with one of closest friends, who I've known for many years, and her 5 year old (both visiting from Sydney); and one of my other closest friends, who's a very new friend from here, and a visiting 7 year old. And why was I 12 years old? I wanted them so much to like each other, that I was on the verge of showing off on their behalf: this is why she's clever and funny! Oh look, and she's clever and funny and insightful too! And you're both so well and widely read! And what about when you said X. Laugh, I nearly cried. And so on. While watching the jungle that is a children's playground, with shade and trees and a woman who seemed to have called her child Peugot (surely not); and another who was shrieking at her children NOT to smile at the camera. Cars, dramas, limbs and equipment. Altogether now, etc.

Also checked out the kids section of the GOMA "Optimism" exhibition yesterday, pondering the way in which I will be able to do these things with Clancy when he's older; and may or may not be able to do them with Morgaine.

Because I was rocked back on my heels at my own naivete the other day, as Abe and I were driving up the coast for the weekend. There's something about the space of a car, with its peculiar intimacy with eyes straightforward but close together in a bubble of contemplation, that often leads to important conversations for us. But I'd been reading various bits and pieces about special needs playgroups, disability support offered from the government, structures and so on, when I commented to Abe that "special schools" were only for children with intellectual - not just physical - disabilities. And he said, "Well, morgaine is both intellectually and physically disabled, so that's fine then." And it really rocked me back on my heels. It shouldn't have, of course, but I realise I'd been so caught up in dealing with her prfound physical disabilities, and being positive and hopeful and proactive about her "unknown" cognitive development (oh well, we don't really know what's going on there; we'll have to wait and see; she may be able to talk; hopefully she'll be able to read) that I'd neer allowed myself to think "intellectually disabled" as a clear phrase.

What terrible in-built self-censoring discrimination does that suggest, in me?

Or a deep denial, that's overlaid (or glibly papered over) with optimism? Possibilities. Hope.

Because of course, if she can't yet understand cause and effect, and is 21 months old, that's a problem; if she doesn't really get "object permanence" (although she does know peek-a-boo is hilarious) then that's an issue; if we're not entirely sure that she recognises the sound of her own name, then that tells us something.

But she also gets things; understands and responds to suggestions; communicates in a lively and engaging way with her eyes. Looks at us with love and warmth. Is thrilled by many things. Knows how to bang that little tambourine. Is excited to see her baby brother.

But why should it be easy to think "physical disability", with all the difficulty that involves; with all the logistical planning and use of equipment; and so hard to acknowledge "intellectual disability"? Sometimes I think it's hubris. A set of parents with 8 degrees between them - most postgraduate - and a confident certainty about intelligence and why it matters and how we use it. We even made a joke about it once, when pregnant with Morgaine. I'm not a believer of any sort, so I can't really think it's the gods on Olympus looking down and having a laff at us, now, can I?

So all of these things were going through my head, staring out the window and trying very hard to breathe, while my lovely girl was in her elaborate special car seat behind me; and Clancy was dozing in his baby capsule. The motorway was moving past, and Beerburrum from the Glasshouse mountains - the father in the legend - was getting closer, when Abe said: "You don't seem very relaxed, are you ok?" And I had to explain why his one sentence, his piece of matter-of-fact comment, had shocked me and brought tears to my eyes in a completely idiotic way.

Twice a week writing on a blog? Or at least twice a week of having reality shifted and impacted on; and a new awareness kicks in.

Ah. And now Clancy is awake.

Advice Manuals, Experts and Robin Barker's Baby Love

Early this year, I wrote a letter to the advice-maven Robin Barker, she of the house-brick sized tomes Baby Love and The Might Toddler. I read and reread Baby Love while I was pregnant, and then in those early months with a new baby, when the overwhelming feeling is of being an amateur - which you are - and needing a range of advice and opinions.

I liked her because she struck me as non-judgmental. She went through the options, dismissed some of the scare-mongering, and didn't seem to be so into blaming women (a pastime with a long history, although it does seem to be on the upsurge, and used by the left as well as the right. The Clive Hamiltons of this world don't necessarily help here either). But after M was about 7 weeks old, when it seemed that Something was Not Right, I read her book, and others like it, with a different intensity. I was trying to read between the lines. Of course, we all read like that, all the time. Around and in between and through the words and pages and issues and narratives. But I'd find the single line, the one at the end of the reassuring chapter, the one that said "of course, sometimes there really IS a problem, and you have to look into it" and I'd try to read through it. Into it. Find some clues.

So I wrote to her and said, "love ya work, babe" or words to that effect, and "would you write a Baby Love for Children with Disabilities"? A smaller market; a more amorphous field; but would you could you might you? And of course, I told the story. Our story. Or rather, our story as it was then when M was only about 10 months old.

She wrote back, a very very generous reply. I'm not going to reproduce it, because I don't have her permission to do so. I know I know, in theory blogs don't follow the usual rules of journalism and permissions and procedure, and "citizen-journalism" is supposedly going to change the world or at least the media landscape, but ethically? Nope, not going to do it.

She did say she'd shed a tear for us. And she did also spell out, very intelligently, why she couldn't really do it justice, especially given the range of disabilities out there; and gave some very practical suggestions of people and contacts who might be able to address it. And since I sent that first, naive, letter I've realised just how right she is. Because since then, I've read more; learnt more; hooked into more networks online (as a lurker, really); and with some ambivalence gone along to the Australian Government initiated  My TIme  groups, where you meeet other parents of children with disabilities, with children about the same age as yours. When you do that, you see just how wide the needs and issues and developmental questions and therapy and health and medical and educational needs really are (as well as the hugely obvious one of just how different these kids are to each other).

Anyway, tonight I finally sent her a reply tonight, 7 months later . . . with a few bits left out:

Dear Robin,

You very generously emailed me early this year in response to a letter I sent about my daughter Morgaine, her disability, and whether you would ever consider writing a “Baby Love with Disabilities”. I’m so terribly sorry it’s taken me so long to respond, as it was such a thoughtful, intelligent and indeed actively helpful email.

Besides, I think you’re right that it’s almost impossible to write a comprehensive guide for parents of children with disabilities, as the needs are so wide, the issues so varied. I’ve had more time to think through what those issues might be, as I come to terms (and not!) with being a “carer”. . . .

I should say, too, that I feel as if I’ve been having variations on this conversation with you for months, because I have found both Baby Love and The Mighty Toddler so helpful, even allowing for the profound differences I deal with every day with my lovely girl. She still can’t sit up unaided, and it’s more than likely she’ll never crawl or walk – but she is progressing, she does communicate (but not yet talk), and is a positive wee person who tries very hard with her therapy and exercised and so on. I was also prompted to write to you now as I know that you begin a series on Life Matters  tomorrow on ABC Radio National  and noted that the theme is the onslaught of information out there.

There IS an onslaught of information, much of it utterly brilliant and helpful, as well as a huge amount of uninterrogated, self-righteous, agenda-driven, sentimental, a-political, anti-woman, irritating balloney. And I must say, that the role you play as a non-judgmental, even-handed, practical expert I find hugely helpful. (And while her style is very different, I find Kaz Cooke similarly non-judgmental and useful.) So I’m looking forward to hearing your thoughts on all that from tomorrow.

But as I find my way through the bureaucracy of disability, the various services, the provision of special needs equipment, the oddness of being part of a supposed “community” of carers, the generosity and warmth of childcare workers . . . as well as the medical and other aspects of this version of being a parent, I find that there’s a lot to learn and there’s a certain need to find a framework for it all. So I’ve decided to keep track of my own experience, adding in a bit more of a cultural-studies, literary/ historical angle (following my own academic background), as well as keeping an eye on the research and journalist side of things, with a view to possibly writing something down the track. Having said that, I don’t want to simply add to the entirely personal, biographical stories that are out there. I know I needed something different, something that combined the cognitive and physical aspects, as well as something that didn’t feed into the sentimentalising of carers (and mothers in particular) as “angels”. So if (and only if) it’s appropriate, at some point down the track I might follow up your suggestions . . .

Meanwhile, I may just be busy: am about to go off on Maternity Leave again, to have baby (boy) no 2, at the age of 42-and-a-half, so that there’ll only be about 19 months between he and Morgaine.

And perhaps I’m lucky, or an optimist, or in a particularly good relationship, or in an especially good position because of the combination of cultural capital and being a bit older and with a career and established identity under my belt – not to mention a very good network of friends – but I’ll confess that I’m not at all oppressed or worn down or upset about having a child with a disability. She’s a delight.

And I hope the over-familiarity of this email from a stranger isn’t too overwhelming for you. I suspect that’s the role you’ve established by entering the lives of so many of us via the book shelf.

Hanrahan the Towtruck Driver

So, it's been quite a week. The work computer, which I take home and connect to work with, via VPN, after two days a week in the office (so I can spread the other "half day" over all remaining days, by staying constantly available to deal with a crisis), well, that packed it in at the end of last week.

Then, the next day, after a day of Being Lovely in a huge nightmare shopping centre, with Abe's mum and the baby, the car wouldn't start. (And no, I won't call her my mother-in-law, because she's not . . . although there's an awful lot of marrying-off that happens up here. And after 20 years + of living in Sydney, where none -- oh, ok, 2 -- of my friends were married, but absolutely no-one else was, am astonished at 40-something, to find that everyone seems to be married in Brisbane. What? Why? And I'm awfully berloody sick of institutions calling me "Missus" constantly. Am sick of saying "It's Ms", after years of not having to. And the BANK up here decided to take all titles away and, as both of us are Dr XY -- although mine's not medical -- some sexist shit clearly decided that couldn't be it, so changed it to Dr x and Mrs Y. Until I was a humourless bitch-from-hell and made them change it.)

But where was I?

Oh yes, car broke down, in ridiculously large carpark.

Anyway, the miracle people got it going again. Took me round and about the place for a few days, and then carked it on Tuesday night at the end of work.

Still, at least Abe could pick up the girl from childcare; at least there were no international visiting obligations to deal with; at least there was a bus etc etc.

Then this morning, headed out again to meet the towtruck driver, because car was comprehensively dead.

And I wonder if you know that old Bush Ballad, "We'll all be roooooned, said Hanrahan"?

Well, this guy was Hanrahan. He wasn't very old, in his rather large truck. He was spherical, and even more so with a luminous vest. Blond, red-faced, bearded. And he looked at the car, and he looked at the (deathly quiet, suburban) street, where I'd managed to find free parking. And he sighed. Then he looked around, and he sighed again. Did I know who owned the four-wheel drive (nope, barely even know the name of the suburb)?

Can't do it, no room, what a disaster, can't block the street, it'll never work.

We'll all be rooooooooned, said Hanrahan.

Et cetera.

And of course, it was all fine. Reminding me that essentially I'm an optimist.

Maybe that's why I'm convinced there are many worse things, many harder things, many more heartbreaking things, than having a charming, beautiful, cheerful girl who will never walk.