Ramping It Up: Children w disabilities, opinions, books

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 . . .

Periventricular Leukomalacia (PVL), or, The Trouble with Diagnoses

It started to rain last Tuesday. And when I say rain, I mean cats, dogs, dingoes, sabre-tooth tigers and various types of cat-shaped deities beloved of the pharaohs type of rain. Bucketing, pouring, torrenting, flooding. Or, in the Oz vernacular: It was faiiir-lee PISSing down. Gutters were gutted; creeks overflowed; roads were cut; football fields becamae lakes. And overnight, it sounded pretty wonderful on the roof, but seemed to freak young Clancy out a bit, so he had his first ever case of "night terrors", and woke every hour - or didn't wake, but cried and shrieked and thrashed about.

And so we get to Wednesday morning. "Eyes like piss-holes in the snow", as my little sister used to say. Abe had various high-level work meetings, of the crisis variety, so I was going off to the Children's Hospital on my own, Morgaine and Clancy in tow, to finally get the results of her MRI. It was raining to hard I could hardly see. Luckily, I've been to the hospital enough that I know which parking place to park in, so that although I have to walk through many buildings and labyrinthine corridoors, I can do it all while staying undercover. But did I say, fast? I hate being even a minute late for an appointment. Of course, I was on time and then had an hour to wait.

I met a woman, who was there with her mother - both in gorgeous saris with cardigans over the top, that classic Indian look that combines style and functionality - and her little girl in the zippiest zappiest pink manual wheelchair you've ever seen. The little girl had spina bifida, and it was a relief to meet such a positive little family. I've met a few other families with SB in the same waiting room, who have been unusually grim and depressing and a teeny bit peculiar. That was just them, obviously, nothing to do with the condition! And Clancy was remarkably patient.

So anyway, we finally got to see the neurologist. He had a young medical student with him, from Oxford, which meant he explained M's condition rather well and in great detail, and made it clear that yes, they have been a bit stumped, and yes it has been a bit of a mystery, and that's why we've done so many damn tests (merosin-deficient muscular dystrophy, Spinal Muscular Atrophy, etc etc all ruled out).

Then he took me through the MRI scans themselves, one by one. See there, he said, that's a dark spot on the brain stem. And yes, she does have enlarged ventricles. But the main thing, is the level of myelination. Myelin is the white stuff in the brain, which coats the nerves (I think that's how you'd explain it), and is about both making the central nervous system work, but is also about complex thinking and brain development. Her level of myelination is way way behind what it should be. (I think you call this hypomyelination.) It's at about the level of a 7-9 month old. There was also evidence of leukomalacia, he said.

My mind was starting to move very fast by about this point in the appointment. The medical terms were flying, which I don't really have a problem with, except interrupting occasionally to check how they're spelt, as I make notes in my diary.

And this is the point where, as an active and informed Medical Consumer, we're supposed to ask questions.

But as the neurologist looked at me expectantly, awaiting a question or two, it occurred to me that the real question I wanted to ask was: what form of speech is that? Is Leukomalacia a noun or a verb? Is it a process or a condition? And it's a little hard to frame that question. Because he really was speaking another language - and I don't just mean the latin that I didn't learn at school (Dapto High? I don't think so.)

So . . . it's all still a bit vague then?

No, he said, it's surprisingly clear I think. I didn't expect to see it at this MRI, but it seems clear that she does have Periventricular Leukomalacia.

Which means . . . ? And how . . .?

Which means brain damage that happened in utero, for reasons we don't know. (He suggested maybe from a faulty placenta. Or it could've been a virus or something. Mostly it turns out to occur with premie babies, which she wasn't.) And PVL (oh look, another acronym) falls broadly into the category of Cerebral Palsy - although hers is rare and of the hypotonic variety, and from what i've read it's in the severe end of that spectrum too - and the neurologist hinted that maybe that was something to think about rather quietly. A hint I didn't get because I'm an idiot. (In other words, think about it for a while and just shut up about it.)

Trying to absorb it all later (after the drama of driving home through heavy heavy rain, wrestling children out of the car and into the house, getting mobility device out of the boot, me getting soaked etc etc; discovering that not long after the roads all round the hospital were underwater and cut off and all that), I couldn't quite work out why I was so thrown and why I was so upset. Major disability? Nothing new there. Intellectual disability? On all rational levels already knew that. An easy label? Why does that feel so hard?

So in the spirit of transparency and blurting it all out, I immediately emailed all the relevant therapists at The Therapy Place, to say it was PVL. Then I saw the rather fabulous physio the next day, and that's when the regret started to kick in. Rather gently, she had to tell me, that this means M can't stay with the Therapy Place. Because it's CP, we'll have to move to a specialist CP organisation.

I'm devastated. Even though the rational part of me knows I shouldn't be. Even though Miz Phyz explained that at least this shows it's not degenerative; yes the neurologist said progress would be slow, but at least there'll be some progress; and with hypotonic CP, we should even meet some other kids who are more like her, rather than M being the one in the room always able to do the least, move the least, communicate the least. But the thought of having to start again, learn again, get the protocols and systems and advocacy and personalities and timings and resources and knowledge and politics again again again lead me to, yes, shed quite a few tears over poor Abe. Besides, I really like these people from the Therapy Place, I trust them.

So I let loose and gave myself a few hours on Thursday night to fall apart a bit; before resolutely heaping it all back in again.

But then I wondered, is there something else dodgy going on here?

While it's a given that there's something useful about a diagnosis, what does it mean that I've resisted it? Perhaps it's the idea of placing my girl in a box, a category, a carry-all: after all, CP doesn't hold any easy answers. Besides, there are many people with CP with no intellectual impairment at all, and comparing them to M won't help. I immediately remember a young woman I taught at uni years ago, who described the way her dad called her "twinkle toes", and it made her think affectionately of her twisted feet. Or maybe it's the thought of limiting M by seeing the category as too easy, boxing her in while ticking that box.

And Myff said, but maybe it's good to know that her developmental stage is at 7-9 months, rather than thinking that it's not, and she's trapped in there. That was a clever response, a thoughtful one, the horror of being too too aware of everything but unable to get those ideas or ambitions out. Like The Childhood Story of Christy Brown, which I read years ago for its verve and its energy and its sheer Irishness. His mother has sort of inspired me in this, her indomitable belief in keeping on trying, in believing in her kid, in trying no matter what. And I'm not about to stop, just because we've been able to look inside her brain to trace the white bits. (Although black humour has come back to bite me. The Childhood Story of Christy Brown was made into the film My Left Foot, where Daniel Day Lewis was renowned for his method acting. What my sister and I used to call the "strap 'em in a wheelchair and throw porridge at them" school of acting. Oh hah-de-fucking-ha-ha.)

Or is it all dodgier than that? Did I not want a diagnosis because something rare, unknown, mysterious, made us "special"? We watched Revolutionary Road on DVD the other night, a terrific and clever and deeply stressful film, about the horrors and mysogyny of 1950s suburbia, the "lives of quiet desparation" . . . and the delusion that they were really terribly special. Not like everyone else. Is that what we were doing, too?

Or rather, was that me?

Something unusual, something myserious, something that might be resolved like a Saturday afternoon movie matinee (throw off the lap rug, get to her feet, and say, Look, Ma, I can walk!); or go from observing, listening, being read to, participating in all of Clancy's lessons until the day she grabs his HB pencil and writes, "Hey, it's me, I'm in here"?

I hope not: that'd be me being vain and silly and unrealistic. But I think there's something in it. The mystery and un-knowing gave me space for extra hope and possibility. So I have to work out how to remake this label and category, to stretch it, to make sure that it also keeps that same space for optimism. I know I can do that.

Besides, it's stopped raining.

Feeling a Bit Wallaby

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

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

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

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

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

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

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

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

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

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

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

** And this is what I sent:

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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