It Takes a Community...

School holidays have just finished here in Auckland, and we are now settling into the last mad dash of fast paced weeks leading into the holiday season and summer.  Normally when working with adults in rehabilitation or fitness settings the timing of the school holidays doesn't really have any impact on service delivery.  However, the lovely community centre where I hire space for my Parkinson's CE group runs a plethora of children's programs during the between term holidays, and my lovely little room is not available so we take a break.

Many of the people attending this group have been coming fairly regularly since last September and all but one -- who is moving out of town -- have signed up for the next term which starts this Friday.   Before we broke up at the end of the school term I surveyed them to find out what they were happy with, what parts of the program they enjoyed the most or found the most useful, what they didn't enjoy, what they struggled with, and what suggestions they have for future sessions.  I gave them the choice of anonymity so that they could be honest and open in their response.


I carefully listed out elements my carefully structured program for my clients to give feedback about in language that was clear and accessible (this is an incredibly intelligent bunch of people -- but that doesn't mean that they know or care what a task series or rhythmic intention is).  I listed things like learning to change position and to stand up fluently, seated exercises, arm and shoulder exercises, fine manipulation and handwriting, speech and facial expressions, walking and balancing activities, memory and concentration work, stretching, and I included the pre-program greeting round and the post program morning tea amongst my activity list.

I list these out because from my perspective each are so important and a lot of planning and thought goes into getting ready to lead a large Parkinson's group.  My clients were all happy with the program and with the balance of the activities and few had suggestions about what they wanted done differently.  They listed outcomes that included better balance and being able to get up from the chair easier or safer, or having less shoulder pain.  But when asked what the most important thing that they got out of the group was, not a single person listed an activity or something mobility related.  You guessed it - psychosocial outcomes were once again featured as the most important.

Here are some of the responses:

"Having Parkinson's feels more normal to me, I see that everybody is affected differently and I don't feel as strange in this group" said one person;

"I have more confidence in myself" said another.

"Realizing that exercise is more pleasant when done with other people" said VW;

"The way the others encourage me" said RH;

"Enjoyment of the group" stated BB, "Oh, and the laughing!"

TM wrote "companionship"; DS noted "fellowship"; JW agreed with one word, "friendship".


Two weeks later, I still get shivers reading these responses.  I feel so proud of this little micro-community, and of the positive and supportive environment that they provide for each other, which allows them to thrive and blossom despite having Parkinson's.  Two weeks later, and that really isn't a very long time, I realize that I miss them.  That I miss the community spirit of this wonderful group and their wives or husbands who often come along; That I miss the laughter, the fun, the games, and the fellowship, and that I'm glad that the school holidays are over and that I look forward to getting my dose of this wonderful community again this Friday morning.
 




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. 

Life Without Limits -- Conductive Education on the International Stage

I was planning to use this blog posting to simply announce an upcoming conference that I will be presenting at -- but it seemed a bit impersonal dear readers, to do so without at least saying hello to you, and telling you a bit about what has been going through my head lately.  That said -- if you are pressed for time and just want the facts, please find a link to the conference which takes place April 16-18th in Auckland below.  My presentation is on Friday April 17th at 2:30 pm and if you are in the 'hood it would be most wonderful to have support from the CE community there.


Work has been hectic and a bit stressful over the last while.  That may or may not be the subject of a future blog post.  Life outside work has been more about exploring, adventuring, and indulging than about maintaining this blog, for which I will not feign apology.  In fact, I actually offer the opposite of an apology -- I offer the encouragement to do the same.  When life is good, get out there and enjoy it.  When things are hectic and stressful, all the more reason to seek what makes you happy and to care for yourself by doing things that offer pleasure, restores balance, and provokes gratitude.

Yes, my time outside work has been about exploring, adventuring, and indulging.  But as conductors we are very lucky.  Politics and organizational crappiness aside, for most of us our work makes us happy, offers pleasure, and provokes gratitude.  On the weekends I love the outdoors -- and New Zealand's outdoor are inspirationally splendid.  During the work week my classroom is my sanctuary, my time with clients feeds my soul, and inspires me to be the best that I can be for them and for myself.  Working conductively reminds me to celebrate being exposed to the attitude and lifestyle of Conductive Education; it helps me take risks and try new things; it helps me value and appreciate being the best you can be within the context of a set of circumstances or of a moment, and it helps me celebrate even the tiniest of achievements and to remember that tiny achievements add up to more than the sum of their parts.  For example...

A small achievement was writing about the benefits of Conductive Education for people with degenerative conditions as part of my dissertation as a student at NICE, and having that shape my practice to this day.  A small achievement was opening my colleagues minds to the possibility of opening our services to people with Muscular Dystrophy and other neuromuscular conditions beyond those typically seen in CE.  A small achievement was getting a pep talk from conductor Mandy Elliott affirming that I was right to pursue this path.  A small achievement was starting to work with people with such conditions, even if at first it was just me providing individual sessions outside of our main programs and groups.  The work was too exciting to keep to myself, the clients too outrageously orthofunctional to deny my colleagues the chance to learn and to understand what we could do to support these people.  A small achievement was building a service relationship with the relevant association here in New Zealand and being invited to speak to their key workers about what Conductive Education had to offer.  A small achievement was being encouraged by the Muscular Dystrophy New Zealand service manager to submit an abstract for this conference and actually finding time to meet the submission deadline.  A small achievement was having my abstract accepted for presentation -- and yes, it is a small achievement as in terms of exercise and lifestyle for people with Muscular Dystrophy I didn't have much competition.  (I will post my abstract in the comments for those who wish to read it).

A big achievement, bigger than the sum of all of those small achievements - for what it is worth - is seeing Conductive Education represented at an academic, international conference.  I have a couple of months to prepare and I would be grateful for any support from the Conductive Community, anecdotal or other, from conductors who have worked with people with neuromuscular conditions beyond the few we typically see in CE and from people with these conditions who have benefitted from CE.  Not to be sardonic, but there is a good chance I will be presenting as an independent instead of on behalf of my current organization, so I could use all of the support from the CE community that I can muster.




Dodging raindrops and finding my feet...

I know I've gone quiet lately.  The past several months have been tumultuous -- I've effectively shut down a business and a chapter of my life, moved country and started a new challenging job, and I guess it is hard to find your voice when you are busy trying to find your feet.  And no, this is not the first time I've jumped from one life chapter to the next, but for many reasons it has been the hardest.  I realise now that part of why this transition has been so challenging is that I underestimated how tenacious the personal and conductive roots that connect me to Sydney have become.

It was heart wrenching closing down Transformations.  It is always hard to say goodbye, and even though I know that friends and clients who over the last decade have become mentors and friends will stay in touch as many from other chapter have done, the nature and consistency of relationships must change.  We always talk about how two way conductive relationships are, and it was very hard to step away from people who have supported me and everything I've done personally and professionally over the last decade.

To add insult to injury, I spent the better part of the last three months in Sydney desperately looking for appropriate people in the rehabilitation and fitness industry to hand my regular clients over to.  I brought carefully considered hand selected trusted colleagues and professionals I respected to meet my clients, hoping they would carry on my work, and many of them balked.  I found myself having those conversations, the ones where people tell you that they could never do what I do, with trusted friends and colleagues and I felt like they were rejecting a part of me when they said they didn't think they could take on one of my clients for an hour a week.  I was reminded of a challenging discussion that Andrew Sutton, back in my student days in Birmingham, lead us as first year students through about understanding that in a profession like the one we had chosen, we were choosing to have disability in our lives, but that we had to have compassion and awareness that it was not something our clients and their families actively chose.  I guess I forgot that the world that is so normal to me, filled with people I value and hold so dear, is such a strange and scary world to so many other people, and I took it really personally that even as a favour to me, let alone the gift of regular client into someone's business, respected professionals would not choose to be involved in my world.

In Conductive Education we have always heard about families who have travelled halfway around the world and disrupted their lives and families so that they would access Conductive Education for their child.  We also need to talk about the wildness of being a part of a profession where the only opportunities for employment in your field often necessitates disrupting your life and family and moving to another corner of the world.  I love, and am grateful for the opportunities and adventures that  a career in Conductive Education has afforded me - but this time I didn't just follow my whim and do what suited me in the moment.  I uprooted a wonderful husband, a person whose happiness and well-being I feel inherently responsible for, a person willing to leave a life that he loved to support me on a journey that I wanted to take, and have watched him struggle to settle in and find his feet and his happiness.  I romanticised the adventure we were going to have together, and actually assumed it would be easier to jump chapters with him instead of on my own and didn't prepare either of us for the roller-coaster ride and bumps along the way.

I also romanticised the job I was coming into, an established adult CE centre, working with two conductors I liked and respected, in a place that I have always wanted the opportunity to explore.  I didn't allow myself to think about things like the subtle but very relevant distinctions between Kiwi and Aussie culture, let alone the culture shock of jumping into established groups that have been running very well without me for years thank you very much, or about having clients who have had years of conductive experience that hasn't included me.  Some of the adults here have been around CE longer than I have - in my professional experience, every group I've run, every client I've had since my student days and other than during my hiatus in Norway, has been a person I've introduced to CE and a group that I have set up and run (with mentorship and guidance) my way.  I have had to learn, adjust, adapt - as have my new clients and colleagues and it has not been an easy ride.

I've also come into an organisation going through change - in fact I am part of that change and the associated discomfort, and worse yet I'm causing some of that discomfort.  I now understand that part of my roll is actually going to be conducting this organisation through change and I am going to have to work hard to learn how to do that.  In other jobs and in other organisations where there has been change, I've had to learn to roll with the punches and have had to learn to fight back where necessary.  I've learned that if change is a wave crashing over you it is hard, so you have to either learn to ride the wave or to choose to get out of the water, but now I'm part of the wave instead of the surfer and to be honest it is really hard to learn how to be a more gentle wave -- it has never been my style and it will have to be my style if I'm going to be any good at my job here.  And that, in itself, is overwhelming, and I hope I am mature and ready enough to change myself.

So three months in to this new chapter I'm still settling in.  But I notice myself composing blog posts in my head, on the train as I head home from work, on my notepad and emailed to myself as reminders of things I want to think about and write about.  I'm trying to keep my head up, to be excited instead of overwhelmed, to count gratitudes instead of raindrops, and to find my feet -- and hopefully my voice too.

It felt like home...

I often write about my experiences, trials and tribulations, of working conductively with people well and truly beyond the scope of traditional Conductive Education.  I am very passionate about this work and about what conduction has to offer a wide array of people and circumstances.  But, that said, when I start to work with somebody with a good old fashioned 'motor disorder' it really does feel like coming home; the tried and tested task series, rhythms, and ways of managing and solving things; the immediate connection and response from the person who suddenly realizes that they are working with somebody who really understands their body and it's seemingly random behaviour; the excitement that sparkles across their face when one of those tried and tested tricks is mastered and used for the first time - witnessing that moment when they let themselves feel positive, hopeful, and in control again.

And nothing makes me feel like I'm home in that professional capacity more than ataxia.  Yes, it was the subject matter of a special research project I did in 3rd year of uni, but moreover -- and despite the relative rarity of ataxia amongst other presentations of motor disorder -- I have had extensive experience and success working with people with ataxias including ataxia caused by rare genetic or metabolic conditions, accidents, strokes, MS, CP etc.

When I met SA, a woman in her late 40s with nearly textbook perfect ataxia and also another of my Enable Me 2 clients, I really felt that for the first time in a long time I had come home.  SA developed ataxia a few years ago as a result of Wernicke's encephalopathy causing Wernicke-Korsakoff Syndrome, a rare, degenerative brain disorder caused by an extreme vitamin B1 deficiency (please see references for further reading).  Everything about the way SA moves and processes movement makes sense to me, and more importantly everything about the way she responds to the tasks, the rhythm, the trick, the teaching, the conduction is predictable.

We planned on 5 weeks of intensive CE -- working on her ability to use specific tricks manage her ataxia through formal tasks and practical applications in her home environment followed by several sessions of community based practical application practice.  We started working, and SA learned quickly and responded incredibly well -- getting up from the floor and walking down stairs with control and without vertigo and balance loss, a rhythmic and nearly restored natural gait with arms swinging gracefully opposite legs and minimal foot slapping, hand writing becoming ledgible again, even exciting tales of spontaneous used of learned tricks. "I brushed my teeth standing up at the sink and could fix my hips even when my hand was vigorously brushing my teeth!" SA reported excitedly one day when I arrived. "I can feel my weight transfer to the foot I want to stand on and it makes me feel like I can dance again", she said.

And then the volcano erupted.  I suggested an outing for the following week that would involve train travel -- regaining independent train travel was one of the key goal areas SA had identified as key to  regaining her life.  SA had started talking about wanting to do more than simple exercises, she wanted to run and play tennis and go places.  She understood how the exercises were helping her but felt ready to move on; I knew that the time had come to get out of the classroom with her and into the world.  SA surprised me with not wanting to discuss going.  I was prepared to let it go and to continue as we were - her body, her life, her time frame; fine by me.  But I had already triggered something, there was no going back and the volcano erupted with an explosive raging vengeance I never in a million years expected from this shy, friendly, good natured woman.

She raged about the therapists and case managers and her mom all forcing this therapy down her throat and telling her what was important.  She raged about her mom, a wonderful woman in her mid seventies who by this point SA was referring to as a stupid selfish cow who just wanted to be free of the burden of caring for her, absolutely not the case.  SA's mom actually left the house during the explosion in tears because she was so tragically in the direct line of volcano fire.  Or perhaps it was too painful to hear SA say that if this was how it was going to be that she had no interest in continuing to live like this and demanding who her mom was to judge her for that.  SA raged on and on about how no one understood that she was unwell and that when she got better she would be able to do everything again; she kept saying "I'm unwell, why would I want to go jumping on and off of trains when I'm unwell".

And that was my last session with her.  In calmer conversation later that evening SA and her mom decided to stop all therapy and intervention for now even though they knew it was helping her.  They enrolled in a community computer course and a neighbour is supposedly taking SA to a local pool for some swimming and promised to be in touch at a later date to review, refresh, or progress the tricks we had been mastering.

I have never witnessed a volcanic eruption of this nature; not in a professional capacity anyway.  I have talked to other participants about their volcano moments when the pressure from emotions and cognition of their life and disability and prognosis erupted; about the moments when denial and reality could no longer co-exist and exploded in tears and fits of rage.  But I have never witnessed it up close and in person with one of my participants, with someone I worked intensively with, with someone I cared about.  Two years of hospitals and medicine and therapy and nothing resembling SA's life as she knew it before she got sick.  Two years of intervention; at the beginning the promise and hope of getting better (complete recovery is possible within a few months of Wernicke's Encephalopathy and very unlikely after that time); now only the possibility of learning to manage it better.  Two years gone and SA going through the motions of rehabilitation and therapy and CE to placate her mother and please the nice therapists, yet still SA thinks that she will wake up one day and that the brain injury will be gone, that her 'illness' will be gone, that she will be better, that everything will be as it was.

And for me, 5 weeks of working intensively with SA and missing her cues, misunderstanding her, not realising where she was at and what she really needed from me.  Today I was discussing the notion of healing with AS in the context of the difference between healing a person of their condition vs trying to heal that person despite their disability.  I hope to one day have the chance to articulate that to SA and to her mother, but I do not think that SA will come back to me or to CE.  I am very sad about that and feel that by missing something so important I have failed someone whom I really could have helped.  I felt like I had come home when I met SA -- when really I had missed an important turn and wasn't even in the right ball park.


References:
http://emedicine.medscape.com/article/288379-overview
http://www.ninds.nih.gov/disorders/wernicke_korsakoff/wernicke-korsakoff.htm

What's going on?

A few days ago I announced on facebook that I am excited about my new affiliation as the Sydney arm for Future Footprints Conductive Education, and that I look forward to working with Eszter Agocs and Future Footprints to provide viable options and alternative opportunities for individuals and families seeking CE in the greater Sydney area.  And as per my plan, this announcement attracted a fair bit of cyber attention (a plethora of likes and comments, some emails, and even some text messages), most congratulatory, but several expressing worry about their current service.  I would like to take this opportunity to explain more about what I am working on with Future Footprints and where I see things going in the future.

First and foremost -- it is business as usual for my current clients (so no, you aren't getting out of your 5:45am training DF, and yes FG and MD, I'll still be working with you oldies but goodies and CE for adults will always be the focus of my conductive education practice).

At present Conductive Education is offered as a specialty under my personal training business -- Transformations: Personal Training for Every Body.  It is one of the many services I offer, along side of the usual personal training offerings such as fitness, body re-shaping, weight loss nutrition, rehabilitation, and training for women during pregnancy as well as post-natally.  I also offer personal training to people with disabilities as a specialty within my personal training business.  And, to be honest, I blend CE into everything I offer -- for those of you who have spent time with CE, you know it is a lifestyle and a way of thinking, being, and doing -- so I can't really turn it off and don't really try to because I feel that the CE approach allows me to be a better personal trainer.

Mainstream personal training is and will continue to be an important part of Transformations; I love the diversity of my present business and am keen to maintain this.  There are certainly a lot of exciting things happening in disability and CE in Australia at the moment but please let me assure you that I have not lost focus on other aspects of the health and fitness industry.  I have just completed an awesome course in nutrition and nutrition coaching from Precision Nutrition and will be certifying as a 'Heart Moves' trainer (with the Australian Heart Foundation) to improve the quality and specificity of the services I am offering through Transformations, and am training under an extremely educated and experienced trainer so that I can continue to grow professionally (and fit into a wedding dress in a few month -- details!).

Over the past few years Transformations has been literally blessed with opportunities to offer CE and specialized personal training to people with disabilities through 'third party funding arrangements' -- Fighting Chance Australia funded CE for nearly two years and recently I have had a subcontractor agreement with Community Care Northern Beaches to provide personal training for their clients.  I am so grateful for these opportunities and have made efforts to give back continuously via pro bono work and above and beyond expected service -- this is made possible by these contracts keeping business going well.  Transformations will continue to seek creative and ethical ways to provide services to people who need them and to find ways to give back to the community twofold.

My subcontractor agreement with Future Footprints is another such opportunity -- it is not a merge with Future Footprints, and Transformations will continue to exist as its own separate entity.  Eszter is a passionate and forward thinking conductor.  She has been courageous in ways that I have not been and has succeeded in opening up her own CE centre -- the first private CE centre in Australia and dare I say one of the most thriving private CE centres in the world.  I have lots to learn from her in addition to a skill set that compliments what her business already offers.  There is a government funding opportunity that is available for children under the age of 7 with disabilities here in Australia called Better Start -- and somehow Conductive Education has been included as a service that families can use this funding for.  Eszter has figured how to work the system and her business is listed as a service provider for Better Start -- brilliant, especially for children living in Adelaide who are able to access her centre.  My subcontractor agreement with Eszter will allow me to offer CE funded by Better Start through Future Footprints Conductive Education here in Sydney.  Another conductor, Gabi Monus, will be doing the same in Canberra.  Good for families looking for CE, good for CE, good for Transformations.

And yes, the demand may well be bigger than what I can currently meet -- even better -- I'll gladly hire another conductor.  There were months when the Enable Me program was bigger than I could handle on my own and I gladly subcontracted another trainer to help me.  When one is excited and passionate about what they are doing there are ways to find extra hours in the day and make things happen.  We -- Eszter and I -- are of course growing our businesses -- but we are also working on what we see as the bigger picture.  We are working for Conductive Education and for the adults and children who want to access it.  And yes, of course if Better Start funding is good for business, it will make it easier for me to get adult CE groups running again.

And while we are on the topic of adult CE, yes -- Better Start is only for children under the age of 7.  But those of us following changes to disability services in Australia and getting excited about the pending NDIS (National Disability Insurance Scheme) see Better Start as indicative to how the NDIS might run -- and more importantly, indicative as to what services might be funded.  Wouldn't it be amazing it Conductive Education was one of those services?  Showing demand for CE, having various CE programs and styles of service provision in the private and the non-profit sector happening around the country, and demonstrating that families choose to spend their precious funding on CE as funded through Better Start is an important political move with NDIS around the corner for everybody with an interest in CE, not just for children under 7.

Please keep your questions and comments coming -- and thank you for your support and excitement as Transformations takes on this new challenge.  I have big plans for Transformations, and it is exciting times for Conductive Education -- watch this space!

http://www.youtube.com/watch?v=Ev2yO-OHc58&feature=related

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

          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.

          A Little Hope Goes a Long Way

          "For the first time in years I have hope" MR said this morning, after gliding beautifully up and down her hallway several times , swinging her arms and counting 1-2 as she stepped, stopping, correcting herself and starting again with control when she lost balance or stumbled. "I feel like I don't just have to cope with it by myself in my head, that there is something that I can do for myself and that I know what I can do instead of wondering if I can do this or should do that".  MR is a single mom with multiple sclerosis (MS) whom I have been working with intensively with over the past several weeks through Phase 2 of the Enable Me Project. When I met her she was beside herself with depression and fear about her worsening walking and balance and not psychologically ready to look at a walking aid.  She was completely isolated, only leaving the house to get her son to school and do the groceries because it was easier not to go anywhere than to risk falling.

          Enable Me Phase 2 is a shorter initiative that was tacked on to the end of the Enable Me Project -- again investigating the same pro-active intervention opportunities but this time for a very different population. Where in Phase 1 the participants were elderly people living independently in the community, the participants in Phase 2 are already 'in the system'.  They are people with disabilities that are already clients of Community Care Northern Beaches (the organization running the research project) either through Community Care's community living program or through their 'older parent carer' program.  At first the case managers were not sure whether it would be appropriate to have a personal trainer involved with this population group, but the case manager that I worked under in Phase 1 argued my case, told them that I was 'specialized' and had experience in disability and told them what she could about Conductive Education.  It helped that of all the clients in Phase 1, the ones who had the most success with 'personal training' were surprisingly the 'frailest' and most 'challenging' (translation - the people with chronic conditions such as stroke and back problems or early stage Parkinson's, or otherwise in the 'too hard' or 'nothing can be done' basket - exactly my cup of tea).

          In Phase 2 of Enable Me -- so far -- I have been working with adults with MS, cerebral palsy, stroke, acquired brain injury, intellectual disability, autism, and pervasive anxiety disorder on a range of goals as varied as the individuals and conditions setting them. I am spending much more time as a conductor and continuing to test the boundaries of CE as an approach to working with people with and without motor disorders.

          Don't get me wrong -- I'm glad for the tools of my personal training trade; MH has an acquired brain injury but her main goals are around fitness and weight loss; a few minutes of yoga are the difference between LE losing it completely or being able to recover and make it through the session after a massive panic attack; JW certainly has cerebral palsy but wants the strength to swim a lap of an olympic pool.

          More importantly, I'm glad for the philosophical tools of my conductor trade from which I approach people.  I'm glad that I can see the person and not just the problem; that I seek the why that underpins the what of their goals and that I value it; that I have the patience to wait for sometimes minute results and that I never get tired of wildly celebrating achievements large and small; that I appreciate the effort and determination it takes to stand up and try again and know to reward effort that when there are not positive results; that I know I need to equip people with flexible and dynamic tools which they can use and modify as and when needed instead of with a list of meaningless exercises to do every morning.

          MR really did walk beautifully this morning; it was the best I have seen her walk in the 7 weeks we have been working together. She seemed to glide down her hallway, swinging her arms, stepping evenly while counting 1-2-1-2, stopping to make necessary corrections without me having to say anything. When I told her so she beamed with pride -- which certainly suits her better than the despair she wore when I first met her -- and told me that her daughter and her friend had both said her walking was looking better, and that she had been out to meet her girlfriend for lunch for the first time in months.

          I'm glad that I could teach MR some core strengthening exercises that she could practice on the swiss ball.  I'm really glad that because of Conductive Education I knew enough about MS and ataxia to be able to help MR with her walking and could help her make sense of her ataxia.  I'm most glad that because of the way that CE has taught me to approach people I knew that the pride and sense of achievement I saw on MR's face was more important than the fluency of her walking, and that the real achievement was not that she walked well enough that her friend noticed but that she had the confidence to go out and to meet her friend.  And I'm over the moon ecstatic that for the first time in years she has hope because my years in Conductive Education have taught me that hope is transformational; it influences potential and outcome long after a person stops 'doing CE' because that person believes in possibility and in herself again.

          MR will be discharged from Enable Me next week. I would worry, but I know that she leaves with a pocketful of tricks and techniques, and enough hope to know that it is worth using them.

          “We are all in the gutter, but some of us are looking at the stars.” 
          ― Oscar Wilde, Lady Windermere's Fan

          More about Conducting "Enable Me"

          I know that my role in the "Enable Me" project is personal trainer / exercise lady.  However, I have been switching hats a lot lately -- mid session and discreetly taking my personal trainer hat off and slipping my conductor hat back on, barely stopping to notice how comfortable it feels, but noticing the change in my tone, the way sets and repetitions of exercises give way to rhythmically intended tasks, the subtle stylistic changes in the way the session is delivered.  The people I work with in this project are in their eighties -- if they notice the hat change they don't react though they certainly respond.  Whether what I am doing would look and sound normal in a CE group but seem a bit odd in the gym is irrelevant to these people for whom the concept of a personal trainer is as foreign as that of a conductor.

          Don't get me wrong -- I am passionate about how valuable exercise is for people of all ages and abilities and firmly believe that exercise helps people stay strong and healthy and can actually intervene with what is often presumed to be an inevitable part of the ageing process.  But there are times when what is needed and what is more appropriate in a given moment or over a few weeks of working with a particular person is Conductive Education -- the learning, the structured approach to problem solving, the way of breaking complex movements into manageable segments, practicing them, and stringing them back together as fluent, purposeful movement, the use of speech and rhythm and intention and motivation as facilitation -- in other words the unique tricks specific to the conductive trade.

          Mr LH's file says that he has had a frozen shoulder, has had a few falls, and has mild cognitive decline.  In reality Mr LH's movement and cognition is characteristic of something in the Parkinson's plus family of conditions -- I of course wouldn't try to guess or diagnose, that is certainly not my role, but I am pleased that the case manager and physiotherapist accept my experience based hunch that there is something neuro-motoric going on and have written a letter that Mr LH can take to his GP recommending further investigation.  I am even more pleased that Mr LH has spontaneously started rhythmically saying tasks and counting with me (it is often hard for me to get people to count and say tasks in individual sessions, especially if they have not experienced the power of rhythmical intention in a CE group); I am even more pleased that when he counts he can walk and swing his arms and get up from a chair and coordinate complex movements.  I hope -- as I often do about my 'hunches' -- that I am wrong and that there is no neuro-motor disorder creeping in.  Without my training and experience as a conductor I would have no entry point for working with Mr LH -- I wouldn't know where to start.

          Mr GL had a major stroke 15 years ago -- at the time he was fit and healthy and his stroke baffled his medical team and shocked Mr GL and his family.  The 'Enable Me' case manager wasn't sure if this was something a personal trainer should be involved in and called to chat with me about how frail Mr GL was and about his increased risk of falls.  I reminded her that I had many years of experience working with people after strokes in my previous life as a conductor.  Today Mr GL and I had our first session -- within minutes it felt like we had been working together for years.  I knew right away which tasks would work and what tricks to start him with, where to put my hands, where to push him, what it must have felt like for him to have his posture and symmetry and weight bearing corrected after 16 years.  I saw his eyes light up when he conquered a task that moments ago had seemed impossible -- a few moments and a little conductive magic make a big difference when those moments are spent practicing and learning to apply nifty little CE tricks.

          There have been a lot of people in the 'Enable Me' program that have been deemed too frail for personal training and who have instead received physiotherapy only instead of a combined approach -- there are a lot of people in the 'Enable Me' program that I would have been able to help if I had been given the chance to work with them.  I got the contract with the 'Enable Me' program because of my work as a Conductor -- somebody whom I used to work with at the local cerebral palsy centre referred me and people involved with the program saw me working at the gym with people in wheelchairs.  But I am contracted as a personal trainer, and what I bring to the table as a conductor is not fully understood or recognized, and therefore opportunities to help people as a conductor have been missed.  At this point I do not believe that Conductive Education will even get a mention when the reports about the 'Enable Me' project are written up.  I hope I can correct this but I am just not certain it will happen.   I wish that when the contract was negotiated I had had the guts to stand up for Conductive Education instead of just being glad for the opportunity to take part.

          Over and over and over again I hear people relate the advice they have been given by well meaning professionals -- 'you have CP / MS / PD / stroke / old age / whatever, there is nothing that can be done, accept it'.  That is just not how we think in Conductive Education -- because I am a conductor I have a place to start and a unique bag of tricks and conductive magic, but more importantly I have a conductive attitude that makes me believe that there is always something that can be done, something that can be learned,  that it is worth trying, so I do start, and start again, and try something new if one thing doesn't work.  I'd like to think that I am the same when I am wearing my personal training hat -- and I know that if I am it is because that conductive attitude is so much a part of me now, or because no matter what role I'm in, I'm always wearing my conductor hat.

          http://195.122.253.112/public/mp3/Beatles/14%20Let%20It%20Be/The%20Beatles%20-%20Let%20It%20Be%20-%2010%20The%20Long%20And%20Winding%20Road.mp3

          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

          rhythmic meditation

          I have always loved the start of my adult CE sessions; the exchange of sincerely warm greetings and chit chat of friends catching up on life and the real world events from one session to the next; 'how are you's?' where the question is genuine and the response listened to; transferring or getting settled and ready to start; the tension of expectant silence before the first task which I always let linger for just an extra second or two so that we can all clear our minds, come together mentally, and prepare for the physical work at hand; and finally the first task delivered and repeated with rhythm so deliberate, connecting and uniting us, setting the tone, tempo, and mood for the start of the session.  I have learned that these moments are so precious, even if the session is not going to be a traditional session following a formal task series, and especially when the participant(s) are accustomed to formal CE.

          AR -- my partner in crime (as well as in business an in life) -- is lucky enough to be the person who gets my unedited and often exuberant monologue response to 'Hey, how was your day?'.  A couple of weeks ago he said -- "...this rhythm thing you are always talking about, I don't understand it".  And I sort of froze.  Not because I don't know, but because I haven't been asked to explain it in such a long time, and because over the years it has become so intrinsic to what I do that I had to work out my response.  So, what exactly is this rhythm thing we talk about and how is it used in CE?  I wish I could explain it simply -- I can't -- but I can try to exemplify how I use it, as a traditional CE facilitation and otherwise, in this instance as a meditation.

          For example, CW is an adult with mixed tone athetoid cerebral palsy who has been doing CE with me on and off for the past 7 years and who has accomplished some phenomenal things.  She is fearless and adventurous, quick witted and mentally agile, always open to trying new things, always working out ways to make something possible despite a relatively uncooperative body, particularly over recent years where suspected cervical myelopathy has wreaked havoc on her body.  We are working intensively at the moment to regain CW's leg strength following a hip operation, and she is awaiting major neck surgery.  We have agreed that our work will be more like 'physio' / rehab / training' for now -- focussed on regaining leg strength and nothing else, avoiding anything upper body because of the risk of doing further damage to her neck; repeating very specific movements several times and then resting and repeating; more like a gym session than like CE.  She is understandably anxious and frustrated.  I see it in her face, hear it in what she voices; when I arrive we talk about updates from doctors, and changing neuropathy, and how things have been since I've last seen her.  And then that pause; that expectant silence, and the first task, the tone, the deliberate rhythm, the counting.  I see her face relax as she counts with me; the familiar rhythm washes over her, the worry and anxiety and frustration shelved for later, the mind cleared and focussed and ready to take on that body.  For CW the rhythm is a meditation of sorts, powerful and soothing, without it I'd just be working with her legs, not her mind.

          This meditative use of rhythm CW utilizes reminds me of a woman with late stage MS that my conductive mentor AB and I worked with years ago in Toronto who used rhythm in a very similar way.  I used video footage of this woman for a conference presentation years ago in South Hampton.  The video was of a session where this woman was working with myself and AB, all three of us verbally intending and counting over and over and over again, trying to coax a leg locked in extreme and painful spasm to relax millimeter by millimeter.  A senior conductor at that conference, in fact one of my university lecturers and the person who had taught me how to work with rhythm, challenged me on the use of repetition and counting in such an intense one on one situation.  At the time, I only knew that it felt right, and I was too intimidated to defend my choice.  Looking back, and I remember that session and the work with that participant so clearly, I recognize the same meditative thing happening that I now see with CW.  The familiar rhythm washing over her, giving her a way to use her mind to shift away from the pain of the spasm, to relax her mind so she could relax her body.  I remember that it was hard for her to count when the spasms were violent, but that when she 'caught the rhythm', breathed, counted that her face changed, softened; that her eyes were no longer squeezed shut, that her body stopped bracing, and if necessary tears could flow uninhibited.  The rhythm was not part of the task solution, but again the way in to the body, the body mind connection.


          You have to be able to focus, to control your energy. You need to make it your ally, instead of trying to harness it, to muscle it. That wastes energy too. There has to be a harmony between you and your body. Your mind and your body, and your soul have to connect in order to move forward. And this comes through relaxation.
                                           ~ Elvis Stojko, Canadian world champion figure skater

          In the beginning ...

          http://www.youtube.com/watch?v=f9u81pqlyHg

          This promotional video -- just recently posted on a colleague and friend's blog -- was made (gulp) over a decade ago when the Adult Conductive Education Program at Ontario March of Dimes was literally in its infancy, and I was a newly graduated, wet behind the ears conductor.

          Ontario March of Dimes continues to run successful Conductive Education programs -- http://www.marchofdimes.ca/EN/programs/CE/Pages/ConductiveEducation.aspx

          On a personal note -- fond memories triggered by every face in that video -- the senior conductor AB who took me from student to professional, each person, each story.  If only I'd been blogging then -- what a wealth of untold experiences and stories.  I'd love to know how you all are now, and for you to know how much you have shaped me, how much you still mean to me.

          Thanks Susie -- what a fantastic way to start my day!

          Here is Susie's blog which recently posted the video, and where you will find a wealth of told conductive experiences:

          http://www.susie-mallett.org/2011/04/it-can-happen-to-anyone.html

          There are places I remember, in my life, though some have changed
          Some forever, not for better.  Some have gone, but some remain
          All these places have their moments, 
          With lovers and friends, I still can recall
          Some are dead and some are living, 
          In my life, I've loved them all                                                                 
                                                                            Lennon & McCartney


          http://www.skreemr.com/link.jsp?id=61534A50525F65&artist=The%20Beatles&title=In%20My%20Life

          Seeing is believing -- and believing is seeing

          We often say seeing is believing -- and this is taken to mean that whatever we it is that we want to believe must first be demonstrated, must be proved, must exist, and must be objectively true.  Skepticism is considered healthy - be critical, suspend judgment, just the facts ma'am.  Our society values evidence over experience and intuition, and faith and hope are considered charlatan.  Conductive Education has been ridiculed and denounced and disregarded -- we haven't figured out how to quantify and clearly articulate what it is that we do; nor have external researchers, and why should they -- it is their job to be critical and objective.   And we, the 'global conductive community' -- for lack of a better way of describing the flotsam of people around the world working in the field of Conductive Education, supporting and fighting for Conductive Education, and benefitting from experiencing Conductive Education -- don't help the situation.  We talk about the intangible and psychosocial defining elements of Conductive Education and then try to find a tangible and objective way to be measured and defined so that we can fit in to wherever it is we are trying to eek out an existence.  Or we quietly do what we do and hope to remain unnoticed and therefore unscrutinized but never actually articulate what it is that we are so passionate about and protective of.

          Where am I going with this ranting raving opening to this first blog, you ask?  I don't pretend to have the answers, just my experience, my stories, and my thoughts.  In this blog I plan to write about some of the unmeasurable and intangible conductive magic underlying the practice -- because it is important, because it is what makes us different, and because it is what makes me and many of the others that I have conducted love Conductive Education.  And I will start today with some thoughts inspired by KD about seeing and believing.

          KD is an adult with cerebral palsy -- she attended a CE group I ran here in Sydney a few years ago.  She is also an elite boccia player and has represented her state and her country at major competitions.  KD thrived in the Conductive Education environment -- she came into the classroom with a determination of steel and an attitude that roared "I will until".  And she did, regardless of who told her she shouldn't or couldn't.  I'll never forget the relief and joy she expressed when we first met for our initial consultation when she expressed her goals and her dreams and I said let's give it a shot.  She was amazed that I didn't tell her it was impossible, and I continue to be amazed that there are people out there like KD who despite decades of discouragement still have the guts to have goals and dreams, let alone express them.  Over a few years I watched KD go from a few assisted steps with two conductors and a walker, to practicing with a friend outside the classroom, to walking across a beach promenade with her walker, unassisted, as part of a fundraiser that she organized so that she could afford to travel with the boccia squad to compete overseas.

          KD contacted me a few months ago asking if we could get started again.  She said that she had had a rough year -- not just any old rough year; frequent and severe seizures, injuries, hospitalizations, life support; we had nearly lost her on more than one occasion.  KD said that as a result she had lost a lot of motor and sensory function affecting her entire life and well-being and, most importantly to KD, her boccia.

          When I met with her for consultation, it was clear that she had not exaggerated any of what she had described.  Her struggle and fatigue were apparent, there was less fire in her eyes -- it still flickered, but it was dim.  I imagine a couple of years of illness, loss, grief, fear, worst case scenarios, and being told that she was lucky to be alive but that no recovery of function could reasonably be expected would extinguish most people's fires -- but KD was still fighting, dragging herself up for the next round.  We struggled through a first session -- very basic movements.  It was challenging for both of us -- because the last time we worked together everything was very different.  KD got teary as we tried movements that she hadn't tried since her down turn, and added more things to the mental list she was keeping of what she could no longer do.  I asked about her goals for our sessions she met my eye (which in itself is a big challenge for KD at present) and said, pleadingly but with determination "I don't care what or how much, I just want to get some of it back".  And I saw the fire -- I stopped seeing all of the deterioration and stopped wondering where we would start -- I saw the fire in her eyes, and I heard myself say "you will".  I couldn't see, but I believed.  And because I believed, KD believed -- without question, without proof, without a promise, without seeing, she believed.

          We believed in hope, in possibility, in potential.  I believed in KD -- more importantly, she believed in herself.  And because we believed instead of doubted, the next week when we worked together it was totally different.  Same bedroom, same body, same debilitating last few years.  But it was totally different.  Her ability to initiate and control movement was different; her pain free range of motion was different; her ability to stabilize non moving parts of her body was different; I'm talking about significant, noticable differences in her head, trunk, and limbs -- despite a stressful week of seizures so severe she nearly missed her own 40th birthday party.  I knew it, she knew it.  No miraculous recovery, but certainly some conductive magic.

          When I commented (excitedly and amazedly) KD smiled and said she had been practicing.  Practicing basic movements physically when she could, in her mind -- visualizing -- when her body was too tired.  Thinking the movement commands to herself or having a friend repeat them out loud to her over the phone.  I lift my arm; I hold my head up; I move my leg.  There was no reason that this could not have been happening previously -- except that despair and frustration and hopelessness probably made trying and practicing seem futile.  A bit of belief -- an attitude adjustment -- refuelled KD's natural determination of steel -- I can; I will.

          We talked that day about the verbal intention used in the CE task series -- not in terms of what rhythm was used or in terms of connecting intention and movement through  external and internal commands and involving higher brain functions.  We talked about the affirming power of the statements in positive present tense expressing and painting a picture in her mind of what she wants.  I lift my arm; I hold my head up; I move my leg -- out loud, in her mind, over and over again stating the goal in present tense as if already achieved, speaking what she wants not what she doesn't, replacing conscious and subconscious I can't with I am; I do; I will until.  Creating an image and holding it firmly in her mind's eye -- believing, seeing; seeing, believing.

          We say 'listen, say, do' when explaining verbal intention --
          Perhaps we really mean 'listen-say/believe/visualize-do'; perhaps the conductive magic is about what happens mentally in those precious seconds before the 'doing' starts.  There is no shortage on literature about the power of positive thinking, goal setting, and affirmation -- perhaps this should be included in our quest to define and make sense of Conductive Education.

          "What the mind can conceive and believe, the mind can achieve"
             ---Napoleon Hill