Ramping It Up: Children w disabilities, opinions, books

Problem solving, making and doing, and yet another seating challenge

Clancy just fell asleep on my lap, as I juggled a bottle for him and a copy of Charles Frazier's Cold Mountain for me. The character Ada - middle class, educated, suddenly without companionship, resources, or even the ability to get through the day and eat well - describes herself as "immensely cheered" by Ruby, the young woman who comes marching up the road full of plans and demands for equality. I also find myself "immensely cheered" by her. This is a book I can always pick up and reread, while finding something comforting about the details of resourcefulness, building, making, changing and having an impact of the world that these two women embark on together in nineteenth-century America. They plow, grow, mend, make, cook, preserve and barter things in an uncertain world. Meanwhile, there's a Civil War, indigenous history (oops, Native American I should say), and a love story hovering in the background. And reading. The power of reading.

There's something about this resourcefulness though, and the detail of it, that I've always found fascinating. As a child I remember loving the parts in books where people made soap from scratch, or built things, or took me to knowledge of places and practices that were utterly unfamiliar. There was a very old copy of the Swiss Family Robinson on the bookshelf - I still have it, red cover with gold curlicues and yellowing stickytape - that answered those narrative requirements for me, as well as indulging my love for fantasy and invention, flourishes of the unlikely. Because now, that book is a strangely colonial, quasi-religious tract, that invents the "Other" so ridiculously that these Swiss missionary types, with their earnest prayers and endlessly patient Mother with her big bag of everything, supposedly landed themselves on an island that had kangaroos and elephants, donkeys and giant boa constrictors, bears and sugarcane, all in the one place. It certainly made me watch Survivor in a particular way.

So this fantasy, of "making and doing" has had quite an impact. That, and having parents who were born and brought up in the Depression and World War 11, who were working class and proud (in Dad's case) of having a trade, as a builder; proud, in Mum's case, of being an excellent dressmaker who could "run up" almost anything. All of this, I think, has instilled in me a belief in the importance of problem solving. Of fixing things. The only drawback, of course, is that I don't quite have all the skills.

And the challenge of M's disability - OK, one of the challenges - is about equipment. Seating systems. Mobility devices. Shower chairs. Special beds. Standing frames. Straps, webbing, and padding. I blithely tend to believe that there are solutions available and then, when I discover there aren't always or aren't easily, go off in fantasies of making and doing. A girl has to have a shed (although I don't); every woman needs her power tools (or at least, one drill); and at the very least there's a sewing machine.

So my latest obsession is some way to allow M to be more readily included, better able to interact with other two year olds, in a park or backyard. Her lovely chariot makes her too high; the tumbleforms seat is too hot; the shower chair was too ridiculously expensive to haul around the place. I tried one of those little foam lounges with lots of props and cushions, but it left her looking like a crumpled teddy bear losing some of her stuffing, slumped in a corner - although it was a huge hit with the other kids, of course. So I'm thinking I need a child's size fold-up beach chair, with a back that will reach up past her head, to which I can attach a head piece and chest strap, and maybe a hip strap as well.

But it's still "winter", so these things do not exist in department stores at the moment.

But it's still "winter" for a few more days . . . although it reached 35 deg C at 4 pm yesterday. We're not quite Spring yet, and it's hot and dry and gasping. It's not quite Spring and I wanted to spend the day walking with Clancy, doing some decent exercise, building up a sweat . . . but not building up quite THAT much of a sweat. Sunburn. Glare. Dehydration. And. So. On.

So instead, I'll try to invent other solutions for my girl.

Meanwhile, I'm back at work for two days a week, enjoying the fizz and bubble of ideas and deadlines, being organised and talking to people, writing papers and pursuing possibilities.

Remaking the morning: Abe and I rushing around feeding Morgaine and Clancy, getting them washed and ready, checking their little bags, getting ready for work ourselves. Not sure what to wear - I'm reading Linda Grant's Thoughtful Dresser (the book not the blog, but oh look here's the Blog, and wanting to be a bit more playful and a bit more extravagent on the clothes front; saw a fashion exhibit at GOMA on the weekend, and thought about colour and flair. Is this OK, I said to Abe yesterday, is this OK? Is it too conservative? I don't care what you wear, said Only-One-Coffee-So-No-Subtlety-At-All Beloved. Not quite my question, my sweet, I said, but decided on the brown dress anyway. Naso-gastric tube down M, ready to give her some water. Ooops, triggered the gag reflex, there goes the porridge. Oooops, KER-CHOO, an oaty sneeze covers me with porridge. Abe looks at me. Yep, I think that dress is too conservative.

Oh ha bloody ha ha. Still, it did mean I went for the more fabulous option.

So, enjoyed the day spent talking to academics and others all round the country. Making frantic notes. Building new schedules. Not enjoying, of course, the end of each day where I hurl myself off, worried that I might be caught in traffic; worried that I'll be late to childcare; wishing I'd got more done; cursing a piece of technology that didn't behave quite as I expected; seeing clocks ticking everywhere. How long does that last, I asked a friend last night, bowing to her expertise as a fulltime worker with three children. Um, never. And yes, there's a lot of hurling about, isn't there, she said.

Tick tick beach chair; tick tick books to read; tick tick letters to write; tick tick washing to do; tick tick prepare for tomorrow's meeting; tick tick check emails; tick tick guilt. Tick tick it's a beautiful day, let's not get too hung up on those deadlines girlie.

Oh yeah, almost forgot, I also had a "making and doing" attack recently when I was thinking about the challenges of childcare and play, representations of children with disabilities, the idea of dolls that look "like me" or, in Clancy's case, look "like my sister", and whether there might be wheelchairs for dolls and stuffed toys available. And yes, I know there are many fraught arguments around all this, about normalising or not, freakery or not, inclusion and difference, the politics and ethics of it (and so on and so forth, and I do remember that the un-Barbie doll "Feral Cheryl" didn't quite take off), so anyway . . .

So anyway I did some searches online and came across some beautiful toys and dolls, accessories and games, toy wheelchairs and ramps - which tended to cost a gazillion dollars or not be availablea easily in Australia. So I grabbed some masking tape and some lids, a funny little finger puppet someone had given us, and voila, toy-Morgaine in a mobility device emerged (until it fell apart and the carboard seat back fell off):

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. ***

Other people's travails

I had an inspiring - or was it sobering? - conversation with a woman I don't know very very well the other day. An impressive, intelligent, articulate woman who I'd like to know better, and who has just published a book that I know will make me think. So how nice that she called to see if I could come along to her book launch.

So, we had a lot of things to talk about. And then I felt terribly ashamed of myself, because of an off-hand comment I'd made early on in this blog, where I commented on the current "trendiness" of autism funding and research and resourcing. By which I didn't mean any slight on those dealing with it, but rather on the ways in which it can be so hard to access information, when it seems to go in waves of governmental and institutional fads. Hmmmm, should have been more careful, methinks.

Because this woman - and I'll call her Xi - has an autistic son, and bloody hell, is she having a tough time of it. Not all the time of course, because she has a good relationship and supportive partner; an interesting job and intelligent friends; a charming daughter and so on. But her son is now at school, and so she's having to deal with what it means that he "looks" ordinary, but has some serious anxieties and behavioural issues; that other people want to see it as a question of "bad parenting" rather than a neurological condition; that he never ever gets invited to other children's birthday parties; that the world is full of people who pass judgment first and then wonder if there might be underlying issues there later on, if at all.

And she told me a hair-raising story about an encounter with a specialist in the area, who laid everything on: a patronising and sexist response to her; very dodgy gender stereotyping for her son (if he's obsessed with anything, to be "healthy", it should be trucks!); judgmental "this is all your fault" crap; and a singular lack of empathy. Apparently he's The Man in Brisbane, has guru status, and it's hard not to see it as part of the Brisbane Problem. Little ponds and big fishes, we agreed, made us both want to run screaming back to Sydney.

So from normalisation to the problem with the ways inclusion can be imagined; from theories of the body to the power and potential of medical models - and the role of Ritalin - it was inspiring to talk to another like minded person, and sobering for both of us to think about the relentless need to be an advocate, to be on your toes, to be "fighting the good fight".

But then, I bceome both amused and inspired by those who turn their role - as parents of children with disabilities - into something else. I've been a fan of writer Ian Rankin since I first hurriedly read "The Falls" in the Rebus series, because a friend who was writing a PhD on polciing, crime and drugs suggested we go to see him "in conversation" at the Seymour Centre, with he-of-the-never-ending-smart-arsery, John Birmingham. Still, I have to hand it to Birmingham, his history of Sydney - Leviathan - is terrific, and he did a very good job of chatting to Rankin. They went over the hilarious "tartan noir" label, given him by James Ellroy (and the LA series is one of the best bits of complicated narrative I've read, although many of his other books haven't quite lived up to those four); and were fascinating on the ways in which a policeman as central character allows him to explore the city (Edinburgh) as well as class and all other aspects of place, as here's a figure who can legitimately enter so many different worlds. Not to mention his obsession with music, his tendency to ruffle feathers, his great sidekick.

But I read an interview with Rankin yesterday, where he talked about his son's disability - he has something known as Angelman's Syndrome - and the way he worked through some of his anger and despair, creatively. It looked as though his son wouldn't be able to walk; so he had his character Rebus's daughter run over by a car and put in a wheelchair. It sounds crude, but he's more subtle than that. A thinker. Passionate. Creative. And now I think of it, Nick Hornby also has a son with a disability, with a quite sever form of autism, and he's used his writing on music, in particular, to taise both money and awareness. Rankin, too, talked about setting up a trust fund for his son. Which makes me think of our girl, and what we might need to do to ensure her ongoing care. When I get in too much of a flap and worry too far ahead, Abe tells me I'm getting ahead of myself but, really, we are older parents: she's 18 months old; I'm 42; Abe's 48; she'll have many years without us. I like to hold out hope she'll be able to live independently, and have a life and career and love and satisfaction and knowledge and friends and networks and art and music and physicality. But what if she also goes through life unable to sit up or stand or wash herself or go to the loo on her own? What then, my sweet sweet girl, what then?

She has, however, learnt that with quite a bit of effort - when we put her in bed with us in the morning, to gree the day - that she can roll over and grab our faces in turn, and laugh with pleasure. Now that, I must say, is a rather charming skill.

A woman I don't know just made my day

Huh, there you go: a reader! Thank you, Virginia Harris from the US. It was a long day - not a bad day, but a long one, definitely. I woke some time after 4 am, to hear the baby cooing away to herself. Abe got up and gave her a pat and checked her nappy and climbed back into bed and wrapped himself around me. That was nice, so I snoozed off, and awoke some time after 5, literally dripping and slippery with sweat. Hmmm-hmmm, too gorgeous for words. Hot because of the pregnancy; hot and sweaty from crazy hormonal dreams; hot from too many covers. Coughing half the night, bugger it, I think I'm getting some sort of coldy thing.

Morgaine was gurgling away, so I got up and did the bottle and breakfast thing, and still managed to be later than I wanted to be. Got to work at about 7:45, leaving Abe and babe behind to do the rest of the morning and childcare wrangling. Only two more weeks left at work before I'm on Mat Leave though, so there's a shitload of things to do, to organise, to write up, to handover, to do briefings on, to make sure I don't forget. And something I've been working on since May still isn't finished and gets more complicated by the minute.

Spent an hour and a half filling in the guy who'll be filling behind me. Another hour on the phone to the guy whose job I'm filling behind. Another hour or so with another colleague doing a job I used to do, with lots of energetic feedback and ideas and filling me in on new freelancers and others. Millions of emails. Reports to write. Some now very very late surveys I'm supposed to do.

And Myff tells me via email she may have to have some invasive, gynaecological, surgery, and I run out of time to reply. Damn damn and damn.

Discover in between work commitments that it's hard to find a paediatrician who might work as a conduit/ overview/ adviser for M. Have contacted 6 in the last few days, who've been recommended, and who aren't taking new patients. What?? Missing Sydney and having a dose of the "what type of berloody city is this anyway" things, and then finally find a woman who will take us on. Felt as though I had to prove M was going to be an interesting case (trust me! she's an enigma! we may never get a diagnosis! Surely that's a challenge . . .)

And of course, Morgaine's name is not really Morgaine, although it was on my personal list. It was vetoed by his-name's-not-really-Abe very early on in the piece. M's name is a little more unusual, and is destined to be spelt aloud forever and slightly mangled. So I was interested although a little annoyed by the tone of the recent Life Matters Talkback on names, which was a little too Anglo in its approach to "unusual" names. As usual, there was some good stuff in there, but it hardly acknowledged the migrant history of Australia, and the long tradition of names being changed. So was pleased to come across this Salon article on the politics of naming especially in the black American context. Not that M's name is a political statement, in case it looks like I'm making any grand claims here.

Where was I? Oh yes, writing in an unstructured way. Would usually either make all of these points discrete, or re-order and restructure . . . Instead, let's see how a bit of streaming goes, hey?

And I do know that in one of my first posts, not so long ago, I mentioned the diarist Samuel Pepys and so was pleased to come across this article about him, his shorthand, his sexual "peccadilloes", and let's face it his mysogyny and violence and arrogance . . . as well as the delicious daily life details of him being distracted by the small of shit from his neighbour, of him NOT cancelling a dinner party on the night of the Great Fire of London, and some great observations on the bourgeoisie and work from the reviewer. A reminder of why History matters.

Oh yes, that reminds me, my fave online feminist history site is Philobiblon.

But where was I, again? No, I need a bit more structure, and I seem to have begun this one not so much around an idea as a chronology ("what a difference, a day makes" -- lordy lordy, I can even hear her singing it). And the working day ended as so often, with the last hour an intense gallop towards the clock, knowing when I have to leave to pick M up from childcare. Cramming in phonecalls and emails and updates and decisions, and surprising young women in other parts of the country by saying I'd heard they did good work, and wanted to know more about who they were, what their skills are, and whether they might be available for 4 weeks, 3 months, 5 months of possible work etc.

Listened to the repeat of Late Night Live on the way to childcare, on the other side of town and closer to home, with some great stuff on the identity of Brisbane with journo Tony Koch and aca Julianne Schultz. Had been feeling a bit jaded and small-townish about the place in the last week or so (did I say I still miss Sydney???!!! well I do I do I do), so a reminder of its vibrance and art scene, the political radicalism that came in response to Joh Bjelke Petersen, the importance of the Springbok tour (although I was too young for that to register as other than historical) and, of course, the importance of the Fitzgerald Inquiry  which I do remember . . . made me feel better about having moved here 2 and a half years ago. But not entirely reconciled.

So, arrived to pick up my girl, who was in the midst of all the other babies and toddlers (great), but lying on her back on a cushion while they all sat up and did their thing (not so great). Was so pleased to see her didn't have the courage to suggest it'd be better if she'd been put in her TumbleForms chair, so that she could sit with them, be in the same eyeline, interact in a different way. Besides, I know they're very good at having her interact. And apparently she played with "goop" today, as part of a whole sensory play thing.

And ah, the warm soft smell of her neck as I carry her out . . .

Then home, and as she's sitting in my lap we check the home computer, and there's a lovely warm reply from Robin Barker, per my earlier post, and a response from my first ever known reader of this blog. Huh!

And to keep up the momentum, M and I do the whole bottle and cuddle thing; sing some songs; she plays in her chair; I finish making a batch of marmalade (yeah yeah, whatever, I find it relaxing); she's thrilled when Abe gets home; dinner of a slightly-too-gristly Osso Bucco I made (yes I AM the cook in the household, but abe does all the washing up and cleaning up and washing). M and I play on the lounge with a ball, even though she keeps sliding off to the side because she can't sit up unaided; while I have one eye on the Brit series "Grumpy Old Women", which had its amusing bits but really I want to grumpily declare they should retire the berloody franchise now . . .

And Abe has been playing with the baby downstairs, and now she's all very cute and ready for bed in her flanny jarmies, here on the spare bed in the study, while i think about heading off to mine, to read a reasonably entertaining history of cleanliness, or maybe to go back to the beginning of David Mitchell's Cloud Atlas because it was so fabulous, or to pick up A S Byatt's Possession for 846th time, because it's the comfort read du jour.