Ramping It Up: Children w disabilities, opinions, books

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.

Becoming a Professional Pest

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

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

- Written a letter the Childcare Centre about access

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

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

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

Sigh.

Something like this:

The Board Thing:

Dear Board Bigwig at the Therapy Place,

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

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

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

In brief:

Representation on the Board:

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

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

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

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

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

The website and its audience

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

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

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

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

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

 

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

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

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

Dear councillor,

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

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

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

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

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

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

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

Could you let me know?

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

3.30 am staring at the ceiling

It's ridiculous to be unable to sleep, when there's a 10 week old boy who's just been fed - lying on my side in bed with milk dripping from my other breast and puddling into my cleavage - and who I've managed to plonk back into his little bassinette beside the bed. Then, I have to set two different alarms to make sure he doesn't sleep more than 4 hours (due to previously discussed metabolic condition) and in theory go back to sleep. Instead, I can hear that Morgaine is awake and singing away to herself, so need to check she hasn't cheerfully got her foot caught in side rails etc. Decide to give her a bottle. And in between these two things, while awake and feeding boyo, I start thinking about the fact today's M's first day back at childcare.

She's moving up into another room (ah, the heirarchy of progression; "you're not a baby anymore, m'dear, you're a toddler!" but you can't and won't ever toddle, oh well). I'm ever so slightly anxious she won't get the lovely attention she got last year, but shouldn't be. There will be extra support, too, via the Inclusion Support Agency.

But i'm slightly haunted by the Christmas Party, and how excluded she - and we - were from that. As well as the sidelong looks (why have they brought in their berloody stroller?). And the barrier provided by that chariot when it came to things like the African drumming and the demented looking Santa. And on a more positive level, my eldest sister (who's very good at these things) gave Clancy a soft toy monkey with a "don't dis my ability" wrist band around its neck. One of my other siblings said, "but that's for Clancy, not Morgaine?" And she pointed out that he'd probably be an advocate etc. Got me thinking. Here was an opportunity for the childcare centre to do its own "disability awareness" stuff and for us to "out" the issues for Morgaine. Probably should hav thought of it earlier. I'm not sure how Abe's strong sense of privacy will go with this, but on the other hand he's not at all afraid of telling people about what's going on with her. And a certain amount of questions and scrutiny goes with the territory. And surveillance.

So I"ve sent off a middle-of-the-night email to the director of the centre, and copied it to the social worker at the Therapy Place. I've decided I like her and should talk to her more.

I hope I don't regret this in the morning:

"Dear Director Groover (I didn't really call her that),

As you know, Morgainestarts back at childcare this morning, along with all the other children. Thank you, we’re looking forward to it and know how much she enjoys her time there.

I realised, though, that I don’t know whether there are other children with disabilities at the centre (and if there are it would probably be useful to meet them), and so have been thinking about whether there are any other strategies we should think about re integrating M into the wider community at the centre. It struck me, for example, at the Christmas party at the end of the year that there are some extra challenges for her with the kids (and parents) who don’t know her and don’t know why she’s apparently the only one in a “stroller” – although the children who do know and interact with her directly are very good at interacting with her, coming up to say hello etc. We’re v keen that she be part of that wider community.

It also struck me that her presence might be useful for other parents in discussing disability and difference etc with their children. At the same time, I know that having a high-needs child in an institution sometimes raises questions for other parents about resources and equity etc – partly addressed by the Inclusion Support Agency and the terrific support from The Therapy Place [or maybe I should start identifying it properly? and why am I clinging to anonymity and pseudonyms?] but, again, this happens behind the scenes. There are also, of course, ongoing issues of physical access, being addressed in the longer term by the Centre, and meaning that we get access via the side gate and through the kitchen.

I was wondering then – depending on how this fits with your and the Centre's philosophy on this - whether it would be appropriate, for example, to include a brief “introduction” of Morgaine and her needs via the newsletter or something similar. I’d be happy to write something for that or provide info. Because it struck me that in terms of visibility etc, M and her orange “chariot” would be more visible in the playground as she moves “up” into her new room this year.

(For example perhaps it’d be worth pointing out that she: has a physical disability and is unable to sit unaided or walk etc; is unable to move to your children and socialise with them, but is in fact a social happy child who loves interaction, if y our kids come to speak to her; that the “stroller” you  might see in the playground is in fact an elaborate seating system and mobility device; and when she’s older she’ll graduate to an electronic wheelchair; that extra support for her is provided for part of each day by govt funding specifically aimed at social integration. And that we don’t have a name or diagnosis for her condition, but it’s not catching, is not degenerative, she’s unlikely to ever walk [etc], and so kids can know everyone’s different.)

Of course, we take your guidance on how best to do this. (And it’s 3.30 am and I thought I’d write an email rather than just lie awake and think about it!)."

So, there you go.

I also wrote one to the coordinator of the MyTime group I'm supposed to go to, saying I can't get to the new time. Which I was told was organised around the schedule of other parents - which given that the last 3 sessions I went to, meant only three of us, but as I'd just had a baby didn't get to the last one, and I wans't asked about my schedule, I'm a tad peeved about! Also, the website suggests some actual thought and planning is supposed to go into the sessions, rather than general chitchat, so I"ve added some evil and passive-aggressive questions about that to my email to her. (Fuck it, I was irritated by her supposed "consultation"):

" Morgaine is in childcare Mon, Tues and Wednesday, so we won’t be able to make it to the meetings, which is unfortunate as more and more I realize that there are things to discuss with other parents, and questions I’d like to ask (How do they approach “labeling” their child or not, and telling other people about their child’s condition? What resources do they find the most helpful? Do they access the Respite Carers’ Centre and what was the experience like? Best accessible holidays? Places to stay and bushwalks etc that work with wheelchairs? And so on.)

I may be able to come along to some meetings, but I’ll have to approach that carefully – the Centre gets funding for an extra support worker for M for some of the time, and I don’t want to jeopardize that by not being there when they have the resources for it. So given that, perhaps there are particular weeks I should think about? I got the sense from the MyTime website that there’s a putative agenda for meetings, and resources and info etc, so are there particular issues or info etc arranged for particular weeks?

Otherwise, does MyTime do online support groups or message boards etc?"

We shall see.

Bugger bugger and bugger. Should have reread and edited and got rid of the poor phrasing, repetition, and oh, I don't know, repetition. (Did anyone say "inclusion" again?) Oh well, it's now ten past 4. Less than 2 hours before I have to feed Clancy again. M has gone back to sleep, and so should I.

Who are your peers?

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

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

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

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

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

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

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

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

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

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

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

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

Black Crows Soaring Towards Me

Eeeek, there are an awful lot of very large black crows in Brisbane, more than I ever saw in Sydney (the drought? the place? the parks?); both have lots of ibises; but Sydney has lots more seagulls, of course. And a large crow just soared towards me, then planted its scrabbly feet on the edge of the roof. (A window between me and it.) And I'm not at all superstitious, or into omens, or anything like that: but it's hard not to be reminded of the many many fairytales, even stories in Plutarch etc, of the omen of the crows as Tiberius or someone else headed off to the Senate.

But I'm not off to the Senate: no, a much smaller version of the Forum today. About to meet with other "parents of children with disabilities" at My Time which still doesn't quite work for me. Maybe today will be more interesting, and less aimless cups of tea and M looking bemused. But maybe I'm just jaded because I was writing reports for work till 10 last night, and still have a lot I want to get done. Stymied by a computer glitch yesterday afternoon when M was asleep and giving me space to do some work but, no, was not able to be productive and could have screamed.

But it was  a day of "could have screamed" all round, with Abe and I speaking to each other horrendously. He has a soft voice, and he asked me a question this morning that I couldn't make head nor tale of, with a doorway between us, the radio on, and M giggling away on the bed. SO I asked 3 times for clarification, and then got the most acid, exasperated tone back, which I objected to ("don't use that tone with me, sunny jim!"). And he replied that it was just because he was speaking more loudly, he didn't have a "tone" at all. But unfortunatley it was the same peevish tone his father uses with his partly deaf mother, which upset me no end. It's one thing to hear yourself turning into your own parents, but to turn into HIS PARENTS?? Fuckin' hell. Will have to do some "happy friendly sexy" we'd better talk about this babe work on that one this weekend: without scaring the horses.

Back to today: and have convinced Abe to go the physio at the hospital with M, barring work crises on his part. And the woman who we see there is fabulous -- but I'm a tad sick of reinterpreting therapists for him, and would like him to learn some of it from her, and see just what it might mean.

Besides, I need a few hours to do yet more work, before my final hand over next week.

Would also quite like to read the article on Duchenne Muscular Dystrophy and male identity, using Bourdieu's critical social theory to analyse it. A friend sent it to me yesterday, from the Social Science and Medicine journal (Gibson et al, Vol 65, 2007 if anyone wants to track it down), and although it's a male condition etc, sounds as though it could be useful. This is the abstract:

"Men with Duchenne muscular dystrophy (DMD) are part of a growing population of community-dwelling persons

dependent on life support technologies. This Canadian study drew from Bourdieu’s critical social theory to explore the

identities and social positionings of 10 men with DMD in relation to dominant discourses of disability, masculinity and

technology. Semi-structured interviews with participants and participant-generated video diaries revealed that these men

were materially, socially and symbolically marginalized through inaccessible built environments, social arrangements that

limited their engagement in community life, and the multiple ways that their bodies were negatively marked across social

space. Furthermore their marginalization had been

embodied

through processes of socialization and internalization of

subordinate social positionings. While the men created positive personal spaces for recognition and success, their

achievements were severely circumscribed by significant social inequities."

So I'd love to have time to get into that, or maybe to explore some of the more banal, but important, social policy and other stuff, like research on children with disabilities from the Australian Institute for Health and Welfare from 2004; and the 2006 bulletin update on same.

Then there's the disability educational policy stuff for early childhood in Qld (and the lack of fit between state and federal systems: is that going to change, Mr Rudd, or are you just going to keep using education to wack people over the head with?); as well as wider stuff on social inclusion and early childhood

Or maybe I should just start with the question of legal rights and discrimination and all that, by seeing exactly what's what via HREOC

Ooops, bugger, or I should really get my act together -- "rattle my dags" as my fab NZ friend Maggie would say -- and load up the 53 bags required when taking a child anywhere, and get going. Sorry M, you've been very patient this morning! Eeek.