It's a long way to the top and other lessons in humility...

A conductor is certainly a specialist, but there is a very big difference between being a specialist and being an expert - and I love that difference.  I specialise in teaching people with neuro-motor disorders strategies and skills to enable them to manage their bodies better.  I don't make up these tricks and techniques, they are not my intellectual property - and I see my role, my specialty, as being able to articulate and share these solutions as openly and as freely as possible, and to facilitate the process of sharing and tweaking solutions that have worked for other people with similar challenges.  I have learned some of these tricks from other conductors, but most have been learned by being a partner in a problem solving process with an individual, and more often by letting my clients teach me the tricks they have worked out for themselves.  This means that the expertise and success are not mine; it means that I am teacher-learner combined, it means that I'm always on the lookout for new tricks to add to my repertoire and therefore always open to learning and growing, and it means professional humility is a part of being a conductor and I love that.

Lessons in humility come packaged in many wonderful formats.  Last week BC, a private client decided to stop training with me.  BC is a woman with advanced Parkinson's who started training with me because she was having frequent falls and trouble getting out of bed.  After a few weeks of private in home sessions she had mastered the tricks and techniques we had been working on to the point that she is no longer falling and can now get out of bed unassisted, and she no longer needed me to come to her home and practice with her.  I could choose to dwell on not being needed - but in reality no longer being needed is the best possible outcome and I'm celebrating. Conductive humility means knowing it is not about me - and that it never was - and there is nothing better than being around somebody who learns something and stepping back to let them own it.

Lessons in humility are sometimes delivered by posties on motorbikes. RP is a stroke survivor and a Harley Davidson enthusiast who has set up a rehabilitation space in his garage with parallel bars and steps - a dream workspace for a mobile conductor.  Last week while I was there working with RP, the postie - a big burly guy on a motorcycle - came up the long driveway to deliver the mail.  This week the same postie came up the driveway on his motorcycle. He had no mail to deliver, just wanted to tell RP that a few years ago he had been in a bad motorcycle crash resulting in a brain injury, and despite what everyone told him he was now walking again, and was back on his motorcycle, and that RP shouldn't give hope.  That day, for the first time, RP and I walked all of the way down and all of the way back up his long driveway.  This week RP did it again, twice in one session.  Conductive humility is being able to celebrate that after months of RP and I working towards something together and of me encouraging and teaching RP, what got him over the hump was a burly postie on a motorcycle and his heartfelt act of kindness. 

It's a long way to the top - but he made it!

Is it CE? YOU tell ME! The long awaited sequel - part 2

This posting is a continuation from my last blog entry.  Now where did I leave off ... insights gained, and lessons learned and reinforced from working conductively with SJ, a woman aged 63 with severe depression and a pervasive personality disorder presenting as extreme de-personalization.  I will set the scene by saying that in minute but significant ways I have had at least comparative success working with SJ - on days when nothing works, I have to remind myself about things like even if I couldn't get her into the shower today, the showers she has most days that I am there are the only showers that she has been able to have in months; that sitting on a chair beside the dishwasher loading dishes that I rinse and hand to her one by one might be the only way that she participates in normal daily life that week; and that the handful of times I have been able to help her feel safe enough to risk going outside of her house are the only outings she has had in months.  I'm not claiming that I have solved this -- not in any way.  I want to articulate how coming in conductively has been helpful when working with SJ and to write about other things relative to the practice of CE that working with SJ makes me think about.  So -- in no particular order other than as they appear in my jumbled notes here are some points to ponder.

I miss having a team of conductors, or a team full stop, around me to problem solve with and to debrief with.  I've been working on my own for a long time but I have been lucky in my years to have worked with some amazing conductors in amazing teams.  We often talk about the group as essential to CE -- it is not just the group of people participating that is important, but the group of conductors, with their different strengths and personalities and ideas.  People other than my fiance AR to share my moments of brilliance, my tiny successes, my catastrophic failures; people with like-minded approaches to talk it out with, so I don't take it home with me; people other than me to wind me up and give me the strength to go in there for one more round.  I am so grateful for my network of conductor colleagues all over the world -- your cyber support, ideas, and emails sometimes literally keep me afloat

It is such a basic thing -- we find a way for our clients to do for themselves instead of be done to.  There are carers who come in and help SJ out with shopping and cleaning and fetching her medications from the pharmacy but when I am there she participates; she does; she is active not passive.  Yes I help her, but only when she can participate, and if she is not able to participate I leave.  The motivating factor might in this instance be that she doesn't want to be alone, but she participates in some way every time I am there.  When she says it doesn't seem real, I reassure her that it is real and that it needs to be done.  The carers tidy around her and she hardly notices -- it further de-personalizes her to be cared for.  When she is involved and active in her own care she becomes more engaged

I give her choices.  I always phone when I'm on the way to make sure she is expecting me and wanting me to come -- a note in her diary is as good as a wink to a blind man.  She chooses to let me in (or not to), she chooses to continue having me come, and she has a contract with me that says that if she chooses to have me there she is choosing to participate.  She understands that I only expect her to be the best that she can be in a particular minute (ie orthofunctional) and she trusts that I will adapt the task to suit her particular minute and thus enable her participation and engagement.  I remember in first year university we had a lecturer (Jayne Titchener) who explained the difference between forward chaining (starting a task from the beginning and learning each bit until you get to the end which might mean never seeing the end or having the success) and backward chaining (learning the last bit first to give the experience of success and completion of the task).  She gave the example of a child with minimal motor control learning to do laundry -- having to sort the clothes by colour and by fabric, then getting the clothes and the powder into the machine -- tasks some of the children we were learning about would not ever be able to do -- vs starting the teaching process by getting the child to push the button so that the machine starts.  I think about this when working with SJ -- what bits of whatever we are doing will she be able to do today, that will give her a sense of participation and achievement?  

I know to start with what she can do and build from there instead of focussing on what she can't do; I know to play to her strengths.  I also know to have back up plans for my back up plans and to be able to adapt to her mood and moment.

We work with the whole person -- when I first started I had case managers saying that I wasn't to engage in conversations about how SJ was feeling or about her depression -- I was just to go in there and promote exercise and activity.  Which really didn't work -- she already has this surreal feeling of disconnect and non-existence.  Imagine me going in there and saying never mind how you feel, today we are going to do 5 sun salutes.  Imagine me going in there and not ever finding out that the only thing that keeps her going is the hope that one day she will be well enough to be a good grandmother to the grandchildren she isn't well enough to see.  We know that you can't separate a person's physical self from their emotional self from their psychological self -- we approach people holistically - which should be wholistically.  We understand that the what of a goal is not motivating without the why of a goal and that good conduction relies on connecting to the why.

I have earned SJ's trust.  This is invaluable.  I think back to those moments when a child takes their first unaided steps with you in the classroom, or when that adult agrees to get down on to the floor for the first time so that you can teach them how to get up, or when that person with MS stays back to tell you what they are most afraid of -- those moments when you realize that the person you are working with you trusts you and you feel the weight of that responsibility as well as the gift of that responsibility.  And you invest further in that teacher-student relationship because they have given you this trust and it enables you to give more when you are working with them -- to push them that bit further; you are in it with them for the long haul, you are no longer just someone that they pass on their journey.  It is terrifying; it is humbling; it makes me work harder and helps me get in there and try again

I cannot imagine what it would feel like to feel disconnected and de-personalized all of the time.  SJ says she looks at things and they don't look real, they seem flat, she feels nothing for them.  I look for proof that she is real, that I am real, that things around her are real so that I can present them in a multi-sensory way.  I plan activities that have sound and taste and smell and touch.  Things don't look real but if we get outside to her garden and she feels the soil or the overgrown grass and weeds the tactile stimulation sometimes grounds her

I know to reward effort not just the end result.  I know to notice and celebrate tiny successes and achievements.  Over and over again my mainstream personal training clients ask me if I always get so excited about tiny things -- and I think about some of the people I have worked with over the years for whom the tiniest achievement was actually monumental and how glad I am that I was taught by other conductors how to notice and celebrate these things.  It is something special that we as conductors do; it helps our participants see value in their efforts and personal achievements large and small, and a day full of celebrating every tiny achievement certainly makes my days a lot more exciting and wonderful

I choose not to give up on people, and even when I'm disappointed in the session or in myself, I try not to be disappointed in them.  With SJ sometimes we need to acknowledge how things went in a previous session so that we can move on, but she knows that each session we have a choice; we either build on the success we had in the last session or we wipe the slate clean and move on.  There is no judgement -- the expectation is that she is the best that she can be in that moment and some moments are bloody awful for her.  We wipe the slate clean and move on.  I can think of children that screamed the roof off of buildings for the first week of CE intensive camps that ended up being the kid who made the most progress by the end of the program.  We don't stop working with somebody because they are difficult, or because they fail, because we know that all it takes is the right thing said or taught int he right way at the right moment that can turn things around for that person

Be prepared to be a learner, not just a teacher -- the teacher and the taught together create the teaching -- I admit I'm not an expert in depression and depersonalization; I challenge her to teach me about it and to share her experiences so that I can learn to conduct her better.  Condutor SM encouraged me to get involved with a craft project that SJ had mentioned -- I was worried that I couldn't lead it if I couldn't do it and SM told me to let SJ lead, to give her something concrete that she could teach me as part of her session and watch her thrive.  We learn to listen to our clients, to let them lead the way.  It always made me crazy to work with strict data collection tools that rated the success of CE based on whether a participant worked towards their goal as you predicted they would -- because we know that learning can take any number of paths, and that when somebody learns something the potential for what they can learn next expands exponentially.  With SJ I don't have a specific goal or agenda other than active participation and engagement -- and I let her lead the way and travel with her, and we both learn along the way.

I am hopeful that things can get better for SJ -- she despairs that there is nothing can be done.  This is the message she has been given from the medical establishment who have tried to do things that haven't worked and have told her that they have nothing left to try.  I am hopeful because I believe that there are things that perhaps can change within SJ, tricks she can learn to manage her disability, skills or strategies or ways that she can personally and actively be involved in fighting this disease versus letting it completely envelop her, problems to be solved versus coped with, something that she can personally do to make things better for herself versus lying in bed waiting for a magic pill to be prescribed.  I am hopeful because I have seen these transformations happen with other people I have conducted -- it isn't about the diagnosis, it is about the transformation of that person from one who is done to to one who does.  SJ despairs that there is nothing that can be done.  I am hopeful that things can get better, and that my hopefulness is just contagious enough that she gets a bit hopeful too -- because then I'll really be able to work with her

http://www.youtube.com/watch?v=Z6CDa-z1MUY

Is it CE? YOU tell ME! - the long awaited sequel part 1

In my last posting I wrote about working conductively with LE, an adult with autism. In this post I want to share some thoughts and experiences about working with SJ, a 63 year old woman with severe depression and a pervasive personality disorder presenting as complete disconnect from everyone and everything.

I have been trying to write this posting for a long time -- I actually have several months worth of jumbled thoughts and notes that I have been keeping for when I was ready to write this, and in fact thinking about writing this has made it impossible for me to write anything else.  In a nutshell that is what it is like to work with SJ -- she is an energy vampire who on a bad day sucks me dry rendering me emotionally spent and making it hard for me to do anything else, and even days that are good by her standards are still very draining.  Working with SJ makes me doubt myself and what I have to offer personally and professionally.  Many of my sessions with her are complete disasters with no discernable positive outcome or flicker of success.  Even on our better days I have this overwhelming feeling of losing the war despite winning a battle, a feeling I have not had professionally since working with a close family friend with ALS in her miserable last stages of rapid deterioration.

SJ started working with me several months ago through the Enable Me program and has since chosen to work with me privately, twice weekly -- this is an important detail as it is a very full on and intensive way to work with somebody.  She demands a lot of my mental and emotional energy.  I'm sure she will tell you it is no picnic having me turn up at her door twice weekly with my high expectations, positive determinism, hope, and cheer in the face of this terrible illness that has made the thought of getting out of bed let alone participate in normal activities of daily life seem impossible for SJ.  She might not have a physical or neurological disability but she is one of the most impaired people I have ever worked with - and that again is a big statement coming from me.

I should add that I like SJ -- I like her a lot.  In the moments when the real SJ claws past the depression and de-personalization she is intelligent, witty, engaging, has a sense of humour, takes an interest in me and my other clients and my life, shows me photos and tells me about her life before this.  My main purpose most sessions is to help create enough of a gap in or a distraction from the black cloud so that the real SJ can claw her way out, even if it is only for that hour or a small part of it.  There are often days, and recently weeks where I have only seen the depressed and depersonalized SJ.

I don't know if SJ believes I can help her, but she would rather have me there than to get through her week on her own.  She has tried everything else -- every medication, several hospitalizations, several rounds of shock therapy -- and I guess my cheer and bossy insistance that she participate in life seems the lessor of such evils.  I don't know if I believe that I can help her.  I believe that supporting her physical health can only help her mental and emotional health, and we try to do this through basic activities like getting out of bed and moving, participating in anything regardless of how minute her participation is, having a shower and taking care of basic hygiene,  taking part in simple healthy cooking and eating something nutritious, and getting outside even for a few minutes.  SJ feels that she cannot do any of these things on her own, and there are many days even with me there that they remain impossible for her.

I don't know if I believe that I can help her, but I know that I believe it is worth trying.  Her case manager believes that she will not get better and that I should brace for the worst -- he told me that there was nothing that could be done and that I could at best hope to make a moment better.  The mental health team feels that she is not responding to their intervention and the other day they said that they were supporting my work with her because it was the first time in a long time she had been willing to engage with someone even though they thought nothing would come out of it because nothing could be done.  My blood boils when I talk to these people -- how dare they write off a person, SJ, my client?  How dare they tell me that there is nothing that can be done just because they have run out of ideas? How dare they judge her potential based on their failure? How dare they pat me on the head when I'm excited about a tiny step forward or try to placate me by reminding me that this is how it is for SJ when I'm worried about a step in the wrong direction?  If they think I'm that silly and naive why the hell would the chuck me in on my own to work with her?  They have no hope for this woman, they do not believe that she can be helped or that it is worth trying, they 'gave her to me' as a way of clearing out their 'too-hard basket', and have stopped trying because she has not yet responded to their best shots.

I believe that 'they' are wrong.  There -- I said it out loud.  Yes I'm 'just a conductor / personal trainer and they are 'the mental health team', and what do I know, but I believe that they are wrong.  I believe that they are blaming her for their failure and lack of solution options.  Even after awful sessions on very bad days for SJ I believe it is worth trying; and on days when I've failed to make a dent in her black cloud I leave wondering what else I could have done or said.  I certainly question what I have to offer her, and I'm not sure that I believe that I can help her, but that is not the same as not believing that she is help-able.  And I hear my mentor AB's voice in my head - 'if something doesn't work we find something else to try or another way to try the same thing - this is what conductors do'.

If the student fails to learn, the tendency, says Feuerstein, is to blame the child: 

'We have a stiff finger that goes only in one direction...  One of the great problems is to make this stiff finger more flexible so that it turns towards oneself, toward the teacher'.  

The teacher has to ask himself, 'have I done all I needed in order to change this child?

--Florence Minnis in The Transformers: The Art of Inspired Teaching (1990)

I needed to get that out of my head so that I can write about the actual insights I've gained and lessons learned and reinforced from working conductively with SJ.  To be continued...

Is it CE? YOU tell ME!

When people ask me what a conductor is, I usually say something along the lines of "a conductor is an educator and re/habilitation professional that specializes in teaching movement strategies and skills to people with neuro-motor disorders such as cerebral palsy, Parkinson's Disease, stroke, acquired brain injury, MS".  Who am I kidding - I don't usually say that, I always say that.  Sometimes I substitute "disabilities caused by conditions like..." for "neuro-motor disorders such as...", but the limited list of conditions and the automated emphasis on movement strategies and skills is always the same and I no longer really believe that this is what a conductor does.  People rarely ask for more details - let's face it, that's a pretty good small talk conversation killer - and I am left with this empty feeling of a missed opportunity to elevate Conductive Education (CE) by talking about the subtle but essential and  essentially human aspects of what I do beyond teaching movement -- the conductive magic -- and its applications beyond the motor disordered population.

Wait a minute - so am I saying that CE is not about teaching movement to people with motor disorders?  Yes - sort of.  In traditional CE people with motor disorders come to learn to move better and on the surface the obvious skills and strategies being learned are motoric.  And yes, I certainly spend the bulk of my time working through movement and teaching movement strategies and skills, though I do not limit myself to working only with people with motor disorders.

However, teaching movement is only the obvious 'on the surface' part of what CE is, of what I do.  Below the motoric exterior, psycho-social change - conductive magic - is happening, not accidentally, not as a side bonus, but as part of my what I am purposefully trying to do, as part of what conduction is.  The movement and the magic are intricately tangled and inseparable.  It doesn't feel like CE unless that conductive magic is there too - those changes that happen under the surface when somebody starts to have hope, have confidence, to connect, to think differently, to believe in themselves, to problem solve, to be positive, to be willing to try.  Those changes don't always happen, even when somebody successfully achieves a movement related goal.  And -- perhaps more tellingly -- those changes sometimes occur even when somebody does not achieve their movement related goal, and these changes may in fact actually be pre-requisites for that person's success.

When that conductive magic is there, regardless of the person's diagnosis or lack thereof, it feels like 'we are doing CE'.  Let's push the boundaries shall we -- here are some examples.

Of all my clients, LE is the one that I feel most conductive with.  LE is 46, rather autistic and rather prone to anxiety.  His mind imprints memories and experiences differently to how yours or mine does.  This makes it really difficult for him to un-learn or un-associate experiences that leave a mark, particularly negative experiences such as a recent fall on a slippery surface.  He also has vertigo -- so understandably going down escalators is a major trigger for his anxiety, especially considering he is looking down at his feet to avoid tripping or slipping.  LE's carers and family were finding it impossible to take him on recreational outings as the panic attacks (which included screaming, crying, and repetitive self injuring at the top of escalators or on reflective floor surfaces) were becoming unmanageable; LE was becoming more isolated and depressed.  My role is to help him regain confidence walking around the local shopping centre and on the escalators so he can resume going on recreational outings.

Through strategic trial and error LE and I have worked out a system for managing escalators and shiny floors.  We choose a landmark on our approach to the escalator or shiny floor where we begin marching and singing (we started with 1-2 buckle my shoe because it was easy, subconscious, but LE has since informed me that he likes ABBA so we now march to the dolce tones of us singing 'Dancing Queen').  As we get closer (still marching and singing) I remind LE to keep his head up and give him something specific at eye level to look at - he repeats what he is looking at while still marching, looks down briefly to check his feet and looks at that focus point.  The marching never stops, the singing resumes and on we go.  If necessary LE knows to march on the spot for a few steps before stepping onto the escalator but doesn't stop moving or singing when at the top (the singing and the concentration needed to keep marching mean that the anxiety a.k.a 'bad thoughts' can't come into his head -- we literally are stamping and drowning out the anxiety with ABBA).  If LE starts to freak as we approach, with the simple command 'detour' we march away, regain composure and approach again.  If we are successful I am over the top with praise and high fives.  If we are not successful I acknowledge the effort, don't react to the panic attack (this takes an incredible amount of concerted energy on my part) and as soon as possible try again until we have a good one because I don't want to risk him imprinting a negative experience of escalators and panic and me, I want to leave him with a positive experience to imprint.

Everything I say when I'm with LE is purposeful.  I don't know what bit of what I say might imprint in his mind, and he is echolalic (repeats certain things that are said over and over, sometimes with increasing volume) and has certain programmed learned verbal responses making his responses to what he is not repeating relatively predictable.  Which means while we are walking towards the shopping mall and the escalators I have time to get him repeating and affirming what I want him to be thinking.  It goes one of two ways.  I'll say 'LE, you've been doing really well with the escalators', he'll say 'well with the escalators, well with the escalators' (echolalia) or I'll say 'you are getting better and better at the escalators', he'll say 'yes I am' (programmed learned agreeing response).  Imagine the effect of me slipping and saying  'you don't seem scared anymore' and him repeating 'seem scared' or me saying 'no biting and screaming like last time' and him saying 'yes I am'.

LE knows the system we are using -- his memory is very good -- so while we are walking we break down the task ahead and go through the plan step by step.  He knows what's expected of him, what is going to happen, and what the back up plan is.  I ask him to visualize it happening perfectly and smoothly, while we are walking and talking about it, and to try to imagine feeling brave and confident and strong and proud of himself - I don't know whether he understands these 'feelings' but he gives me these words back as part of the dialogue we have when we are talking about the system or visualizing doing it and I ask him he feels.

I know it must sound odd, but it works so well to work conductively with LE - the manifestation of his autism lends itself so perfectly to working through repetitive intention and systematically broken down and practiced complex tasks.  Repetition of key words and phrases and systematisation of everyday tasks are weird for most people new to a CE environment but are perfectly normal to LE -- it's how he does everything.  Because I can manipulate the way he already uses language to affect his thinking, intention, confidence, ability and can use language so obviously to plan and structure his actions he becomes able to do things that seemed impossible to him and to those helping him.  I'm working with what he already could do - repeat things, memorize things, walk rhythmically - and using his autism positively instead of trying to stop him from being autistic.  His mom and carers have reported that he is managing better with them now and that he uses the exact system with whomever he is with, even 'explaining' it to new staff.

Is it CE? You tell me!  I'll give you some more 'unusual examples' of working conductively and of variations on the conductive magic theme in my next posting.  In the mean time you can LOL while you think about LE and I marching our way onto escalators singing....        http://www.youtube.com/watch?v=REElUors1pQ

"Yes, I am a dreamer
For a dreamer is one who can find his way by moonlight
and see dawn before the rest of the world."
-- Oscar Wilde --

Conducting when it's Confronting

I try not to roll my eyes when talking to some well meaning person about 'what I do for a living' and 'whom I do it with', when with their hand on their heart and their eyes welling up with tears, they tell me what an angel I am, express marvel at my patience, or assert that they themselves could never do it though they know it must be incredibly rewarding.  It angers, frustrates, and outright amazes me that when people see the people whom I work with, they see my humanity and not my client's, as if my client's humanity is shrouded by their disability.  But I try not to roll my eyes.  I try to respond in a way that is not pedantic or condescending because for whatever reason it is human nature for people to be frightened by those who are different, to prefer not to deal with the reality of their own mortality, to be generally uncomfortable in their own skins, and to feel confronted by the very physical world of disability.  I understand that for the most part people mean well but feel confronted.  And yes, disability can be very confrontational - even for people with disabilities, caring for people with disabilities, or working with people with disabilities.

Today I sat in my car sobbing after my initial consultation with KH because his story and his circumstances were confronting; because I already cared and wanted to help him but didn't know if I could, or where I would start.  I'm telling you this because though I love what I do, sometimes it is hard and sometimes it is confronting because life and disability and disability services can be unfair, awful, and heart breaking.  I've never really been good at the whole 'professional objectivity keep people at arms length thing' - and I accept that sometimes that means having very human, emotional gut responses to people that I meet, or things that happen in the lives of people I work with and genuinely care about.

On days like this I miss working with my very good friend and conductive mentor AB because we talked about this stuff; she validated my feelings of confrontation and was not afraid to show me hers - such a precious rarity in a senior professional and so important to my professional development.  On days like these I think about how AB mentored me - no actually, how she conducted me - from these moments of professional despair back into our classroom refocussed and ready to confront what had confronted me.

I often try to imagine what AB would tell me in moments like those after I met KH today.  AB would say "we have to try" no matter how impossible something seemed. If something we tried didn't work she would say "we have to keep trying until we find a way".  Today when I told KH that I didn't know how far we would get but that I wanted to try, he typed out that he was expecting me to tell him that there was nothing that I could do, like everybody else told him and that he was happy to try.

If I told AB I wasn't sure if I could help someone, she would say "of course you don't know, you have't tried.  But you are a conductor", she would say with pride, "we try, this is what we do".  She is so right - though there may be similarities from one person to another, each person, each body, each disability is different.  We improvise, we think on the fly, we make it up as we go along, and over time and with experience start to refine this 'trying'.

If I told AB I didn't know where to start, she would ask me about what KH could do, and would remind me to start there.  Though I'm still not sure exactly how or where I will start with KH, I am amazed that in his 50 plus years of living with his brain injury he has found ways to manage as much as he has, and trust that he will show me where to start.  AB would say "conductors don't have every answer, but that's ok if we keep looking -- this is what we have to teach the participants".  Thinking about KH again, I remind myself that sometimes this is also what they teach us.

Today after I met KH, I sat in the car and sobbed -- it was confrontational and I was upset and I wanted to help but was scared.  I think that we need to talk to each other about these feelings -- I believe that they are a very real part of being a conductor.  I hope to be able to write something motivational and exciting about what conductive education has helped KH achieve sometime soon.  But today I'm writing to tell you that though meeting KH was confrontational, upsetting, and caused me to doubt what I had to offer through conductive education, after my imaginary debrief with AB this afternoon I am ready, willing, and excited about the opportunity to try.

http://www.youtube.com/watch?v=skYfPirQHbY

A day in the life...

Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night?  Days so rich in experience and life it seems impossible that they were only days?

My day started with an initial consultation for Mrs PS.  Mrs PS has just joined the Enable Me pilot project and I will be her personal trainer for the next several weeks.  She will turn 90 during this period.  She has started to be a bit wobbly on her feet.  Her goals were to improve her balance and walking.  When I asked what 'improve' meant to her -- she said that she wanted to feel more confident when she was walking, that she didn't want to have to think about every step as much, especially when she was turning, and that if she could learn some techniques that she could rely on she wouldn't have to work out where to put her feet every time she wanted to move.  Shhhh -- don't tell -- I switched hats -- this is a job for Lisa the conductor, not Lisa the personal trainer.  Mrs PS also said that since she fell -- and she quickly pointed out that over two years ago she had had one fall and nobody would let her forget it -- she has lost her confidence.  She is not the first person to tell me that it was hard to know if the walking difficulties were actually due to some sort of problem with the legs or were physical manifestations of lost confidence, but regardless, walking was a challenge.  I hope that if and when I turn 90 I can fathom the idea of some personal trainer showing up at my door with her exercises and equipment first thing in the morning.   I hope that if and when I turn 90 I still believe that that it is worth giving something a go, that things can get better, and that you are never too old to learn a new trick or two.

Next I went to see Mrs BS -- we have been working on managing osteoarthritis and regaining core and leg strength and on mobilizing her hips and knees following hip injuries and replacements.  Mrs BS is motivated; she practices and works on everything I show her, and has made brilliant improvements, and is moving through the world relatively pain free.  Mrs BP is motivated; she is caring for a husband with a neurodegenerative condition who is in a nursing home and she needs to be mobile and well so she can help him.  I knew he was in a nursing home, I knew he had dementia, but today she told me about the neurodegenerative disorder, about how she tries to help him stand and how she gets him in and out of the car when she takes him out of the home for the day.  Next week and for a few weeks afterwards I will go with her to the nursing home to see if there is anything I can teach her to make it easier for her to help him; he won't remember that I have been but I hope that I can help her.  I will not charge her for my time -- she is a regular client, and I am my own boss and only have to be accountable to myself for how I spend my time.  Being self employed can be chaotic and challenging, but when things like this come up and I don't have to ask anyone for permission to do what I feel is right or justify decisions I make around the service I provide I am reminded that I am where I want to be professionally.

I then went to see FG, a young adult with atheosis and dystonia.  FG is a force to be reckoned with -- this fiery redhead is a policy officer working at the state disability and discrimination legal centre.  I admit it -- I was very intimidated by her when we first met 8 years ago.  At the time she was a law student and disability rights advocate, and I a soft spoken and shy little Canadian conductor trying to get an adult program off of the ground.  Over the years we have had some heated discussions and debates; she has been an incredibly valuable resource, an advocate for Conductive Education, and a friend.  A few months ago she opted for deep brain stimulation -- electrodes implanted into her brain to help her manage her dystonia.  It was a brave risky surgery,  I believe that she was the first in Australia with cerebral palsy to have the implant -- but it proved the right decision and has helped her tremendously.  Until about a month ago, when she had a fall and one of the wires broke.  Today we were 'kicking it old-school' -- pulling out the old and almost forgotten tricks that we had worked out several years ago to make living with dystonia a bit more manageable.  Today we were talking about emotional rollercoasters; what it is like to struggle, take a risk, get better and then have to go back to struggling again; about getting mentally prepared for another round of risky brain surgery next month; about consoling worried parents when you are worried and scared yourself.  I find myself taking mental notes on dealing with set backs and hoping that when faced with adversity, like FG I can 'fall down seven times, stand up eight'.  I find myself thinking, once again, how lucky I am to have people in my life that teach me life's little lessons.

From there I went to the hospital -- they had a special deal on just for me today -- I could see two clients for the price of one parking ticket.  CW has had her spinal fusion; her surgeon is very pleased with the way it all went.  CW looks a bit frankenstein-esque with a mad scar across the front of her throat and a another one from her head to the middle of her back.  Last week she pushed to be moved out of ICU -- as her husband put it, her brain was ready, but her body wasn't quite there yet.  Today, as CW said, both were ready and she had just moved into her room in the regular ward and is on the mend.  She is gearing up for a long rehab period, but already thinking about what we are going to work on first once she is out of the hospital.  CW's sister is a nurse and is very involved in everything to do with CW -- but she is currently on the other side of the world.  CW assures me that her sister is as involved as ever, calling ICU and getting the updates before CW gets the information.  I think about the special bond between sisters and wonder how my sister and my little niece way over there on the other side of the world are doing.

I then went across the hospital to the spasticity clinic where I met KD.  She asked me to accompany her to this appointment; we were hoping to get some sort of understanding as to why her spasms have become so constant, so violent, and so painful over the past few months, and of what could be done to make things better for her.  The disability health adviser for the Cerebral Palsy Alliance and KD's house manager were there also -- everyone knew KD in different contexts and had different information to bring to the table.  As a conductor you never know how you will be received in a formal clinic at a hospital and whether you will be just dismissed because you are not a physio.  This doctor that we saw was amazing.  We were with him for nearly 2 hours answering questions and discussing what was happening and how things had changed for KD -- he listened to what everyone had to say and treated everyone with respect without regard for our professional disciplines and using the various perspectives to help him put a case history together.  Most importantly -- he spoke directly to KD , looked her in the eye, verified everything we said directly with her, and made it clear that he was genuinely interested in her and wanted to try to help her.  In fact when he saw the way that she was spasming he offered to come out to assess her in her home where she could transfer and lie comfortably and be spared the horror and indignity that being examined on a standard examination table would have meant for her.  I have never heard of a high ranking specialist offering something like this.  I was reminded that there are amazing people in positions of authority who are humane and kind and humble, and noted my surprise at this, and noted that I had come in prepared to advocate and fight for KD (and for the validity of my professional opinion), and, noted that my cynicism was perhaps an unhelpful attitude that required adjustment.

Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night?  Days so rich in experience and life it seems impossible that they were only days?  Amazingly enough most of my days are days like this -- actually I believe that everyday can be like this for everybody -- if you take the time to experience and live and learn.

"It is shocking to find how many people do not believe they can learn, and how many more believe learning to be difficult. Muad'Dib knew that every experience carries its lesson."

--Frank Herbert (Dune)

http://www.mashuptown.com/files/13_Bring_Me_Back_To_A_Day_In_The_Life.mp3

Ask the Expert - or Putting the 'E' in 'CE'

Before I had any real understanding of what Conductive Education actually was, I was interested in it.  I had the general idea that it had something to do with helping people with disabilities and I liked the idea of helping.  I didn't really know what was meant by 'conductive' -- despite lengthy debates amongst other students and conductors, reading Andrew's various analysis' over the years, and spending the last 15 years trying to trying to explain it to other people I'm still not totally sure what it really means.  However, I did understand the word 'education'.  I have long been passionate about education, teaching, learning, and dynamic potential.  I had some amazing teachers over the years; teachers who lifted me, who inspired me, who saved me from my teenage self but somehow I couldn't see myself standing at the front of a classroom and 30 kids in a mainstream school teaching curriculum subjects.  You might think that hopping on a plane from Canada to England to pursue a career based on some vague ideas about helping and teaching and disability was a bit insane, but at the time it really felt like this perfect opportunity custom designed just for me had somehow fallen out of the sky and landed at my feet.

And yes, we studied anatomy and physiology, etiology and presentation of conditions and diseases, and disability politics.  But much more, we studied pedagogy.  We learned about learning and motivation and potential and transformation and experience.  We learned about Vygotskii and his 'zone of next potential', and we learned about driven and inspired teachers like Feuerstein who didn't just find ways to teach people deemed 'unteachable', but believed so much in the power and processes of education that they sought and developed alternative ways of teaching and unleashing potential, and in doing so transformed the potential of education itself.  We learned about inspired teachers like Peto who chose to see past the medical model of disability and to believe that teaching and learning could positively  influence the presentation of disability, and developed a holistic pedagogy around helping people learn ways to manage their bodies.  And we learned that everyone could learn, and that learning is a lifelong process, that learning is dynamic and non-linear, and that learning is a shared two way experience between teacher and learner and that both teacher and learner learn and grow as a result of the interchange.  These ideas still excite and fascinate me today.

CW is working to regain leg strength following a hip surgery, so that she can push through her legs and bridge in her wheelchair and therefore be able to adjust her position in her chair to get comfortable and to allow her to get dressed and do other things involving position changes more independently and without hoisting.  Last week after our session, CW and I were chatting, reviewing the progress that she had made over the past few weeks.  We agreed that there had been slow but steady improvements in the movement and strength of her legs but that we were both frustrated that the bridging wasn't happening.  CW respects and trusts her orthopaedic surgeon -- his best advice was keep doing what you are doing.  CW works with a fantastic physio -- who gave us great feedback on how much pressure CW was able to put through each leg and which muscles were and weren't firing -- interesting and useful, but again, not getting us anywhere.  We had worked out the obvious things -- that mechanically a huge change in leg length would change everything and had tried everything to adjust for that, and still, well, nothing.  Then CW said that maybe it was more about where her back was in her chair now, and that if she had something behind her to bridge over it would work.  And this light went on for both of us -- yes leg strength was vital to the bridging, but CW doesn't bridge like other people bridge, she has a complex system of arching her back and triggering a reflexive movement and then using her legs to support her.

So the next session we tried ... and here is the result

But the real result ... another reminder that though I'm the teacher, I'm also the learner, and I am certainly not the expert.  I have some pieces of paper from university saying I'm a conductor, and I have years of experience working with many people and their incredibly different bodies and have learned some tricks and 'task solutions' that I can share.  But I don't know what it feels like to be in CW's body -- she is the expert.  And because as the teacher/learner I had the humility to say 'I don't know, what do you think' and as the learner/teacher she had the confidence to say why don't we try this, we both learned, and we found a solution.

“To be a teacher in the right sense is to be a learner. I am not a teacher, only a fellow student.”                

            -- Soren Kierkegaard, Danish Existentialist