Ramping It Up: Children w disabilities, opinions, books

Smiling through a Naso-Gastric Tube

Nursing, it has seemed to me this past fortnight, is as much about technology as it is about bodies and (of course) language. Calibrating oxygen flow. Measuring blood gases. Taking blood pressure. Attaching dots for heartrate monitoring. Connecting boluses for feeds. Hooking up morphine drips. And being surrounded by machines that beep and whistle and hoot; even by beds that make electronic chirping noises if for some reason the side bar is pressing on the air thingo that's pumping up the mattress that slightly vibrates to mitigate the pressure sore. Bedsores, hey, how terribly Dickensian. Or not, as it turns out. And that's not to mention the marks from the intra-osseous, the twenty jabs from the various heel prick bloods, the bruises in the crook of her arms from the mainline, the arterial line and iv line.

All this is academic and interesting when all you have to do is look on, learn how to turn off the most annoying alarms for (say) 30 seconds at a time, or know what question to ask if you see another person in protective gear advancing with the medication/ feeding tube/ whatsit at the wrong time.

Until they suggest you take some of that technology home with you.

Oh, bugger.

Instant panic followed 15 seconds later by jolly-hockeysticks oh well, time to learn a new skill now type response.

It looks as though my girl will come home tomorrow, but with a naso-gastric tube still in, and a special pump and liquid feeds all ready to go. And litmus strips to test her stomach contents; syringes for water; "sets" to be inserted; and a list of instructions spinning around my head, for Abe and I to follow. All of this is because of a "delayed swallow" that means, in her weakened/ depleted/ immuno-suppressed, delicate state, that my lovely smiling, interactive, back-to-almost-normal, giggly girl (who looks extremely robust and not at all like a delicate wee flower), could inhale food and water and choke or get pneumonia all over again.

So here we go, an even clearer sign of "difference", that serves to "medicalise" her, because even without the machinery attached, she'll have a tube stuck up her nose and a great big piece of tape on her face. Still, that once would have confronted me to bits, but I've now met so many children like that I hardly notice; and every second medical person I see says "is she naso-gastrically fed?" and I've always hapily said "no! Not at all, never, eats kinda normally".

Now I'll just say, Yep.

Oddly, as the speech pathologist, paediatrician, registrar and nurse were talking to me about this -- all professionals, all women -- and I was asking about whether this can be supported in a childcare centre etc, the suggestion was made that perhaps she could just be in ch-care very briefly, or I could go and change over all the feeds etc . . . I realised the presumption was that I wasn't working. The Speechy said, well, we'll just trial it for a month or so, and then she looked rather shocked when I said, "And I'll be back at work". Feeding and "toileting", it's the absolute basics, and why I guess so many "carers" don't do other work. But bloody hell.

Another, rather charming, nurse in PICU (intensive care) asked me, "What I did before I was a mum". What? OK, it's not just about being the parent of a child with a disability, it's the oddity of being on maternity leave with Clancy, as if no one really believes you're going to be back at work. At the same time, in a hospital, you're surrounded by working parents, just as you are in every other bloody workplace.

I was also "practiced on" today by an OS geneticist who had to pass a standard Australian paediatric exam in order to work here, so I got to be one of his test cases. He had an hour to grill me on Morgaine's medical history, examine her, and make up a plan for her care. Of which he spent more than 40 minutes with me, including the social-cultural section where he said oh, and did you return to work after having her (ye-e-e-es indeed I did, buster). He was also pretty funny on the social-relationship angle, as we were clearly too boringly well adjusted and coping, so when I said I worried much more into the future than Abe does he said good good good, I'll say there's disagreement there! (Complementary approaches to imagination clearly don't fit into the chart for such things).

But did I remember to say, in case this sounds like an all out snarky little whinge (rather than my bleak reflections of last time, where it was all about confronting demons) that my girl is smiling again? Interacting? Terribly amused when the baby came into the room? I've been trawling through the bookshelves of the playroom, to find things to read to her, and have found all these books of children's poetry, of the silly "homework sucks" variety, with lots of rhythm and rhyme. She doesn't seem to mind. And a sanitised and slightlyl dated collection of Hans Christian Anderson stories, lacking the wonderful pathos of the very old collections, and baulking at the bloodthirstiness of many of them, while keeping the class and strained sexual overtones. (Hmmm, now that was an overdone sentence.) By which I mean the Emperor's new clothes felt very political; the dogs with eyes as big as millstones had all the class elements plus allowing everyone to be horrible to old women on the grounds they're witches; while the story of the eleven wild swans had some icky abduction in it, but failed to include my childhood memory's fave sob-in-the-throat detail, where the shirt woven from nettles was flung over the eleven swans, but the last sleeve of the last shirt was unfinished, and so the youngest brother still had one wing. I felt ripped off by the lack of that final tragic delirious wing . . . but M didn't mind in the least.

And no, I will not not not pad out that story by referring to wings or broken wings or the transformative magic of children with disabilities rising up and walking (amen) because this is a blog, it's not a matinee movie on a rainy afternoon. It's also, in some sense or another, my life.

Time, Lists, Hair and Sign Language

Oh dear, it's been too long. Surely, like sex, twice a week for blogging isn't too much to ask even if, with both, daily would be better? And clearly I have too many thoughts in my head, and not enough coffee, because so far each sentence has too many commas, too many clauses, not enough clarity and bugger all wit.

But perhaps that's because I'm feeling untethered; as though my forehead is floating ten centimetres above my head. You see, I just dropped Clancy off for his first day at childcare, and it feels odd odd odd. I wasn't ready for it to happen for a few months, but at the same time I was becoming increasingly anxious that I'd be back at work with no childcare organised. So when the director of the centre said hey, we can get him in for one day a week, I had to say yes. And then, here we go, the Disclosure question again, I had to explain MCAD to them while trying not to freak everyone out. Of course, it's not at all as confronting as explaining M's disability, but it's about treading the fine line between asking them to take it seriously, and insisting that really it's all going to be fine and they don't need to be too anxious or fearful.

But I left him there after ten minutes of him beaming at everyone, playing with a stuffed frog, leaning on one elbow on some cushions, and then falling asleep with that look of utter abandon children do so well, with arms flung over head. Then I turned around to see that Morgaine had a scratch down her chin that was gratifying in showing that she's a part of the regular gang, given a swipe by the pipsqueak kid with big hair. And while it's true she can't really defend herself, I'd rather that than her being left in a "safe" corner somewhere. Because my image of horror has become the beanbag: where the "immobiles" are left to moulder. (A rather tactless friend described in detail to me - more than once - how this is what can happen to children with disabilities in institutions. She specialises in statements like this: not in a malevolent way, but often in a way that feels a tad combative. She also said one day, "well, you'll be changing nappies for a long time". Goshdarnit, I'd nevah thoughta that. So anyway, I realised recently that The Beanbag sits inside my head, in its lumpy way, as visual shorthand for institutional neglect. So retro chic belongs to particular decades, for me!)

But hey, it's not all looming symbolism. No, not at all. Had an interesting experience of the black humour of other parents of children with disabilities last week. Still doing the Hanen Method course for children with "delayed" language. My sweet M is clearly the most delayed of the group, not even at the pointing and consistent ("intentional") gestural stage. There are five of us doing the course, but for various reasons there were only three of us there last week, with the two Speechies. Although the course is good, some of it is too much like a comprehension exercise, that's frustrating for those of us used to absorbing and assimilating a lot of information rather quickly, so to my relief the woman leading the course last week was more lateral than the other. She asked us to extrapolate modes of language use from particular scenarios, breaking it down. But she wasn't expecting the extent to which our own circumstances transformed supposed "everyday" experiences into (what?) obstacles. And we'd reached that stage where a collection of people becomes a group with its own grammar and humour and knowledge of each other.

So imagine, she said, that you've gone out to a cafe or restaurant, and your child picks up their bowl of food and throws it into the face of a stranger. How would you feel?

Me: Well, I'd be delighted that she'd ever have the strength to do that!

Comrade 1: I'd be thrilled that he could eat anything at all not made by me and that won't cause a fatal reaction!

Comrade 2: Given that he's fed by a naso-gastric tube, I'd just love it if he could eat normally!

Hmmmm, so we had to behave and admit that if we had a Normal Child we might respond by X, Y or Z. In other words, there was a rather lot of smart-arsery, which can be a relief after the potential for angst and earnestness in these situations. And of course it can be fun to be a bit naughty. But the profound difference between dealing with disability and dealing with "the rest" reminds me of the Ian Dury line about the Walkie Talkies, as his way to distinguish the "regular" world from those proudly Other, like him. The young woman who comes to do some Respite Care with M refers to those who are "Mainstream". (Mind you, she also talks about "disability children" rather than "disabled children" or "children with a disability", so am not sure what I can conclude about the language of this world. And I still think it's funny that she couldn't bring herself to tell me that her 4 am return from a party happened at a "Godless hour". She called it a "goshless hour". I am soooooo not used to people who are conventionally religious. Or in fact as conservative as she is. Twenty years old, and she asked me rather guilelessly - quizzed me, rather - why Abe and I weren't married; whether or not I went to church; if we'd ever get married. She'd never encountered such a thing. So apart from mumbling a few "Feminism 101" responses, and thinking You Really Do Need to Get Out More, it left me pondering just what Respite is "Respite From"? I have to be very careful that I don't find myself locked into spending too much time with other people in this particular world.)

But back to the Hanen Method course. I also wondered about introducing Makaton Signing to Morgaine, as a way to incorporate it into our household use of words and language. It's a system that recognises that "real" sign language is a full system of language; and instead is specifically for those children who are language delayed but who may, hopefully, one day develop spoken language. Key words in a sentence are signed, and only those. I figure that Clancy will speak early (he's showing all indicators), and may as well learn the signs too. The problem, of course, is whether and how much M gets any of the regular gestures, given that waving, pointing and so on are currently beyond her. She does move her arms to indicate pleasure and desire, to show she wants more . . .

Oh blah blah blah.

I need rather more focus and point to it all here.

I think I'm using this blither in order to get my mind in order for the huge no of things I want to get done today: submission to the Therapy Place about the structure of their board, and asking for response to the fact there's no person with a disability on the board, as well as no parent/ carer; submission to the childcare centre about physical access, health and safety and (really) equity; finalise funding application; response to council and local state member about general access in area (crap), and more specifically about new park proposal that doesn't seem to have any principals of disabled access incorporated at all. And so on. Oh yeah, and overdue tax returns. And a million other things. and medical appointments for M and whether she is eligible for a special bed as she has a neuromuscular condition. Phonecalls. Research. Hassling. Hustling. The enduring and ongoing need tobe an Advocate and an Educator, to have more and more Capitalisation in my life.

Whereas it'd be fun to think through writing on memory and madness and pain (I reckon I held my breath through the last three chapters of Sebastian Barry's Secret Scripture); or on hairdressers and camp (a young woman - a teenager - was getting her hair Done with a capital D in the seat next to me on Saturday. Hot rollers and loops of hair pinned up. The hairdresser made some comment about how he loved doing such Glamorous Dos, he used to do it all the time. At another salon, she asked? No, when I was a drag queen, he said. And surely the pisstake opportunities of this truly hideous, OTT, bonkers hair was there for all to see? I would've laughed if I hadn't been gagging on hairspray.

I did some historical research once on hair and its cultural meaning, and read the little magazines of the barbers' unions in Australia in the 1920s. Some great stuff on the shingle and the bob, as well as details of what they'd do before then. Women's long hair, plaited in place, with stray hairs singed out of the way for a smooth look. Whereas the "male" techniques of bobbing and shingling were seen initially as radical, liberating, lightening, setting free the weight of convention and revealing the neck. But the biggest mystery, it seems to me, is the weirdness of bridal hair and "formal" hair, which is lost in its own mad mad mad conventions of ringlets and rolls and sweeps, sprays of flowers and times long long gone.

Snip snip snip; snipe snipe. Time to go, really.

Left Handed Screwdriver Operators

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

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

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

Oops, Clancy definitely awake.

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

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

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

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

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

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

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

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

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

And our children may or may not be getting that.

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

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

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

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

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

Speech Pathologists

Just spent a rather intense hour-and-a-quarter with a speech pathologist and OT with Miz M. Started wtih observing how she eats: and at 17 months she still does the "forward tongue thrust" that newboarn babies do. Which means she doesn't have the jaw stability or mouth control that she needs to be able to eat properly or, yet, to learn to speak. Again, the physical and the developmental all tied together. Although she certainly communicates, and I believe she understands quite a lot, and responds to thigns in a way that shows understanding. But given the connection between words and actions, how do you show the meaning of "stop", "go" and "no" (for example) to a child who can't move? Other kids get it because they run towards you and then learn "stop!", or because they have regular head control, they can look down at a toy car and you can show "stop" and "go". All of those things have to be broken down, incrementally, and imagined as a series of steps, in order to show Morgaine how it works.

And in watchign her eat her breakfast (porridge with banana, and deliberately lumpy to encourage mouth exploration and strength) the Speechy wondered if she was breathing back bit sof food etc, given the occasional laboured breathing and funny little sounds -- which may cause ongoing problems, esp given that she just had pneumonia (and 5 fun-filled days in hospital). So suggested we should organise a swallow study (and the little mite in the pamphlet I've linked to is sitting in a TumbleForms Chair just like the one M has at home, so that all makes sense). Yet another of the million appointments to deal with.

I need to contact the "respite care" people today to organise a home assessment, for OH&S reasons etc, before setting up some possible respite care for us. Another thing to get my head around.

Feeling a bit wobbly and less than robust, in fact, after a breakfast run-in with Abe, where I partly expected him to be able to read my mind; and partly would have liked a bit of extra help in organising things. But I hate it when I respond in an overly emotional way to day-to-day pressures. Blah blah and blah. 

And have been asked to go along to a special workshop to find out more about how you adapt everyday items into tools for learnign and exploration etc, with an "active learning" approach, which also builds on the work of Lilli Neilsen . It's also connected to the Hanen Model of speech therapy and language development, which I need to find out more about.