Waxing physically and philosically...

After literally years of deliberation, and as a result of some delicate and some less delicate prodding, this blog is my effort to organize - to bring together - my thoughts about my work as a conductor and as a personal trainer, to rant and rave as necessary, to celebrate the little things and the larger moments of brilliance, and to share some conductive magic and life lessons gained through 'waxing physically and philosophically'.

Saturday, July 19, 2014

A few more life lessons...

A few weeks ago, newly qualified conductor Jalyss Zapf posted a list of 10 things CE has taught her.  A brilliant list actually (I wish I had written it!), a list that made me proud to be a part of the same profession that Jalyss, still wet behind her little conductive ears, was writing about.  A list that generated support and interest from heavy hitters in the CE international community - including one of my Australian participants who quickly rose to the challenge.  Here is a link to Jalyss' post:

http://jjzapf.wordpress.com/2014/06/25/10-things-conductive-education-has-taught-me/

Jalyss ended her post by challenging others to add to that list.  So Jalyss, I've been building this list for you and I've been adding to it over the past few weeks.  I want to thank you as the exercise has reminded me that every day I learn something from CE and from my participants, and that part of the gift of conductive pedagogy is the embrace of an attitude of life long learning.  I hope Jalyss, despite any challenges CE throws your way, that your life is enriched by this crazy profession over the years as much as mine as been and more.

CE has taught me:

1) the power of the conductive community - our classrooms bring people together in a microcosm of hope, support, positivity, genuine relationship and lifelong friendship.  The rest of the world is not always as kind - but having the conductive community to fall back on is invaluable.  Conductors are a part of this wonderful community - we are so lucky. 

2) as cliche as it sounds, my attitude of gratitude has its foundations in my work

3) a sense of appreciation - no, more than appreciation, amazement of how incredibly different each person and each circumstance is, and an ability to celebrate and love people and their differences

4) the power of motivation and determination - when you understand the 'why' behind the 'what', the 'how' is just a matter of problem solving. 

5) what resilience actually is - I don't know where it comes from or how to create it, but when it is there people seem to be able to withstand unbelievable hardship and difficulties with grace and stubborn strength that lets them stand up, rise up again and again.  I hope that resilience is contagious and that when my turn comes I will rise again

6) how to have hard conversations, how to be honest and still positive, how to be present for people when times are tough, how to be there even if you aren't sure what to say or do and when really you would rather take your own awkwardness and hide

7) Jalyss said this but I'm going to say it again - it is wonderful and worthwhile to celebrate achievements large and small. Sometimes even tiny things mean a lot and make a huge difference in someone's quality of life, and tiny things add up to be huge things over time

8) it is always worth trying.  You might not know what you can achieve with somebody, or where you should even start, but it is still worth trying. There is always something to learn and something to teach. You don't have to be an expert - just be willing to try, and to be honest about that process

9) to expect the unexpected, to learn to like surprises, to be able to adjust to a moment, to be flexible with your plans.  Jalyss mentioned how to plan - she is right.  Planning is not just about planning a session - planning is also about thinking about who might lose their balance, who might have a seizure, who might be affected by a humid afternoon or a cold morning; who might ask a question that needs answering in that moment and throws your whole plan out the window - surprise!

10) as Dr Maya Angelou said "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel". Which is totally true - except in CE people seem to also remember what you say and do too...

11) that the relationships we build with people are powerful - and should be nourished.  Yes, as a conductor we are professionals, but it is a profession that is very personal and the relationships build are hard to define or limit. We are a part of people's lives and they are a part of ours. There is sharing, trusting, there is love - sometimes over years and sometimes beyond the classroom setting.  There are funerals and weddings and 21st birthday parties - the stuff of community, the stuff of life. That you can love so many people over so many years, that your capacity for conductive love is boundless

12) that you can't fix everyone or everything; that sometimes your best is not good enough, that sometimes someone won't want what you are offering, that sometimes it is just not meant to be

13) that in a conductive group there is an exchange of energy between you and the other conductors and assistants and all participants.  Sometimes that energy will build in the group and lift everyone and you will end the day feeling fantastic.  Other days you pour every bit of energy into keeping the rest of the group afloat and you will need to find a way to replenish your supply. Your energy is one of your most valuable conductive tools - but you can't guard it so you need to be able to refuel as needed

14) it's not all about me - in this profession and in life there is more to consider than what I want or how I feel. That the team is valuable - not just the staff team but that your conductive group is a team- and that team work makes it better.  We don't do to or do for, we do with.

15) it is okay to make mistakes and to let other people make mistakes; that is is okay to say sorry; 

16) that there is a balance between teaching people to take risks and teaching people to evaluate risk and make good decisions

17) patience - at least to be patient when I see value in what I am doing.  I'm still working on being patient in general

18) that you will have ups and downs in your career, you may get tired or burn out.  But if you are passionate about CE - if it is your calling - it gets under your skin, and into your blood, and into every cell of your being so that it becomes more than what you do, but who you are and how you do everything that you do.

So there you go Jalyss, and like you I extend the challenge to the conductive community - what has CE taught you?



Thursday, June 19, 2014

Feuerstein in Aotearoa

Last Saturday night I attended a lecture at the University of Auckland introducing Feuerstein's Instrumental Enrichment to the New Zealand market.  Andrew Sutton has encouraged me to share my thoughts about this here.  Considering it was ridiculously cold outside and that the presentation was held from 7 to 10 p.m. on a Saturday night (after shabbos of course), they did a very good job, completely packing the university Auditorium – I'd estimate 600 were there.  They had enough demand to schedule a second meeting for Monday night.  Saturday night's presentation was free, Monday night was at the museum and was being charged at $15 a ticket.

Local speakers 

The Feuerstein Institute positioned themselves really well – they opened with a TED talk about stem cells and neuroplasticity in adults by Dr Richard Faull from the Auckland University Centre for Brain research. Dr. Faull was also in the audience and gave the closing remark.  



The second speaker was Professor Ian Kirk, the co-director of the Research Centre for Cognitive Neuroscience within the Centre for Brain Research, and leader of the Human Neuroscience team in the School of Psychology. He spoke about being able to prove that learning actually changes the brain.

The third to speak was Anne Gaze.  She talked about the volume of children with learning difficulties in New Zealand and the cost (emotional and psychosocial as well as monetary) of their carrying their disabilities and labels forward into adult life.


The visitors

Next up was Rabbi Rafi Feuerstein (Reuben's son and by chance the parent of a child with Down's syndrome – which is how he got pulled into his father's work).  He was interesting and dynamic – not quite his Dad's presence but powerful and believable – nothing new to those of us already familiar with Feuerstein.. He introduced Instrumental Enrichment, dynamic assessment, cognitive modifiability, discussed some of their work (e.g. the project with Ethiopian immigrants to Israel), and showed a case study. 

Rabbi Feuerstein took us through one of the assessments (dots and lines out of context, needing to be joined to make specific pictures), then worked through the types of likely mistakes to show how they used these tests to find out specifically how someone thought and learned – and what they needed to teach too.  There were lots of shameful giggling as individual thinking styles were elaborated.  I was one of the ones who tried turning the paper upside down and sideways - showing a lack of understanding of general rules.

There was a question period –  the usual stuff –  who do they help, how long is the intervention, what does it cost, can people be trained in New Zealand?.  Rabbi Feuerstein answered and was supported by Chaim Guggenheim, the Feuerstein Institute's Vice-President in charge of international and business development.  A woman in the audience  provided anecdotal reflection, saying that her school had Feuerstein instructors on the team and spoke about the difference that it made with the students, some of whom had 'overcome learning disabilities' to go on to university education as a result.

'Feuerstein' in New Zealand 

The Feuerstein Institute will be running a course in New Zealand.  Their model is to teach Instrumental Enrichment to teachers and therapists – they do not plan to run a Feuerstein satellite or actually work with children here.  There are a few teachers here already qualified and the plan is for Israel to support them and the newly trained in July through professional development. Instrumental Enrichment trainers from Israel will coming back and forth as well for yearly research updates and, it seems, recertification to ensure quality of program delivery.  The of course played their non-profit card very well.

Regardless of what anybody thinks about research, academics and funders are always impressed by it, and the Feuerstein Institute is able to brag papers totalling well over one hundred thousand research papers.  Their website links to many of them -- you can find out more about the Feuerstein Institute, their method (Instrumental Enrichment), their theoretical basis (Structural Cognitive Modifiability), and their plentiful research.


As impressive as the presentation was, I couldn't help but feel saddened sitting in the audience.  Not saddened because of what the Feuerstein Institute has achieved, but because of what we in Conductive Education have not.  The support from the Centre for Brain Research at the University of Auckland, a platform of over one hundred thousand research papers, and a sturdy foundation of academic work underpinning what they are doing.  I include myself here, and am guilty as charged, but we certainly need to lift our game if we are going to see Conductive Education move forward.

My personal contact

I approached Rabbi Feuerstein at the end of the presentation, offered my condolences about his father's recent passing, and told him that I had the opportunity to meet his father in Tel Aviv at the Tsad Kadima conference (he knew Tsad Kadima and asked about the work with cerebral palsy). I told him that I was a conductor (and he knew what that was) and he had heard of Andrew Sutton.  It was a really pleasant exhcange.

He asked why I haven't yet qualified in Instrumental Enrichment. I told him that I'm interested and will keep my eyes posted for the New Zealand. I have also emailed Chaim Guggenheim to express interest in upcoming courses in NZ, who has since responded and promised to keep me in the loop.  I will look forward to see what come of Feuerstein's forray into New Zealand




Sunday, January 26, 2014

Eight million things I love about Em

One of the most wonderful ways to mark time in this profession and on this planet surely must be the pleasure of seeing kids that you conduct evolve and grow into wonderful young people.  Last week I had the pleasure of indulging in this experience for an entire week, when ES decided to hop on a plane from Sydney to Auckland for a visit and a good old fashioned CE kick in the butt.

You can know she is working on her second university degree, you can see her driving around the neighbourhood in her own car, you can go to her 21st birthday.  But suddenly there she is, in another time and another place, confidently introducing herself to a class full of adults, talking about her disability like it is the weather or the cricket, self motivated and focused during the program like all of the other, well, adults.  Suddenly there she is sorting herself out, getting up and dressed on her own and going to bed later than me, ordering cocktails or coffees or whatever she wants, checking to make sure I'm okay after a hectic day, and holding her own in conversations about educational psychology and disability reform and politics. There she is at the airport patiently explaining to the desk staff that she is a person requiring assistance and that no she did not require me to accompany her to the departure lounge (!).



It is hard to describe the way I feel about ES.  There is respect and awe; respect for the journey (which I hope one day she will write about) that she has taken to get to this stage in her life and awe that despite it all she has turned out so wonderfully.  There is pride and gratitude; pride as in I'm so proud to know this person and to introduce her as a friend, pride around seeing what she has become and what she has yet to become and gratitude for what I have learned and experienced by getting to be a part of her journey for the last decade.  There is fierce big sister style protectiveness that has pretty much been outgrown and has been replace by friendship. There is the dance that has to be done whenever a relationship grows and changes which can be disconcerting until you remember that this is what people who see each other through life's transitions have to do to move into the next chapters together.

I see her fall on the beach at Takapuna - the first time she has fallen with me in all of our years of walking together - and see her stand up and brush the sand off of her jeans and laugh about getting wet.  Years ago falling would have devastated her but now this young woman has learned how to fall without falling to pieces and knows how to bounce instead of break.  I find myself wanting to write about her transition, realising that it is not my story to write, and hoping that one day she will tell the world how a fragile and emotionally wrought teenager psychologically trapped by her cerebral palsy finds her way into resiliency and rationality and confidence in adulthood.  I listen to how she talks about how she thinks and feels, about the ups and downs of life in the last few months, and can't help but be amazed at how she now rolls with the punches instead of letting them knock her out, how she gives as good as she gets, and how she now understands her own self worth and is willing to fight for it.



She leaves, and the house is quiet, and I settle back into my routines wishing that I'd had a bit more time to talk to her and that work and life weren't so hectic.  She leaves but isn't gone, like those wonderful people that dance in and out of your life over years and decades, and I realize that we have both watched each other grow up - and that kind of scares me, and I start to think about all of those other wonderful 'kids' making their way in the world of adults as wonderful young people.  I am reminded again how lucky I am to be in a profession that allows me to be on or at least bear witness to these journeys, how lucky I am to be in a profession that allows me to get to know and love so many wonderful people, how lucky I am to be a conductor.

ES, 'I hope you don't mind, that I wrote down in words, how wonderful life is, with you in the world!'



Sunday, November 17, 2013

Conducting myself as a manager..

There are some conductors that have found a way to carve out happy niches for themselves and to happily work within the contexts of their organisations or own businesses - but happily employed or self employed conductors seem to be a minority.  Most often, when you talk to conductors working all around the world, there is an undercurrent of frustration; frustration about not having choice in or control over the programs they conduct and frustration about restrictions and rules and policies for their organisation or governing and funding bodies that get in the way of what they see as best conductive practice.  For years I have been advocating for conductors to step up and take lead roles in organisations providing Conductive Education, and for organisations to look to conductors to build, shape, and manage programs.

I can certainly confess that I was a frustrated grumbler in previous places that I worked - and though I am not sorry that I fought for what I thought was right for my participants and for CE, I am sorry that I was not mature enough, or clever enough to to find ways to thrive within organisations that were trying to support me and CE. When I look proudly back at what has been achieved by my baby, the program at Dimes Canada, I realise how impatient I was, wanting everything to be perfect and perfectly my way right away, and that I was not able to see how hard the organisation was working to bring about change or to appreciate how much behind me - and CE - they were and still are.   I now realise that I got too frustrated with the teething pains of a new program and too caught up in what I saw as the good fight to engage well with management or to step up and take the reigns even with ample opportunity.

Now, years later in another time and another place, after years of successful private practice, I find myself sitting in a very different position as a managing conductor in an organisation brimming with potential but working through transition. A exciting position within an organisation that has chosen to give a conductor the opportunity to build and shape programs; a tenuous position working with frustrated conductors dissatisfied with previous management; an unfamiliar position within an organisation and a program that I haven't personally built from scratch.      

I am emotionally unattached to the history and politics of the organisation but respectful and empathetic to the frustrations of the conductors I am working with and their relationship with what has been, and their resulting demotivation. I do not feel threatened or needing to fight with senior management or board members; I accept they do not necessarily think like conductors but appreciate that they are supportive of seeing our program continue to succeed and grow, and accept that part of my job is to liaise between them and the conductive team. It is an oddly mellow headspace to be honest, an odd combination of bustling passion and excitement and calm clear-headedness that I haven't experienced in any other CE job that I've had.

I have had the opportunity to reflect on how I conduct myself as a managing conductor.  As I've said time and time again, and as Andrew told me years ago, being a conductor is not about 'what you do' but about 'how you do everything that you do'.  In this job there are times when I'm working as a conductor, and times when I am working as a manager, but I know that when I am wearing my manager hat I still think and feel like a conductor.

I have a general manager that I love working with who I have been blessed to have as a mentor - DB is a compassionate and dedicated manager with vast experience in management, governance, and leadership in non profit, disability, and education organisations.   He has given me structure and space to grow and learn, and challenges me to find a way to take this role on my way, conductively, and is patient as I try to find my equilibrium as a conductive manager.  I dare say that he is in fact a 'conductive' manager.

I have stopped trying to see conducting and managing as different - in the classroom I conduct my participants, and I the office I conduct myself and my team -- and I assure you conducting conductors is by far the harder of the two.

As in the classroom, I find myself digging my heels in about believing in my team, about expecting the best from my team even when they are under-performing, about believing it is always worth trying to find a way forward even when my team do not see it.  I still strongly feel responsible for being part of the solution, and believe that it is possible to find a solution even if I'm not the one to find it.  When things haven't gone well I wonder what I haven't done well, what as a manager I should have done better; when things are going well I feel really proud of my team and enjoy their success and the levity it creates in our office.

Even after challenging days or minutes with my team I find myself falling back on an attitude of rugged positivity and tenacious determinism - the very same attitude I have always had with my participants.  Even after a challenging day I still come back in the next day ready to try again, and hoping that this might be the day when we find the break through that moves us forward.

I want to be able to find ways to motivate and inspire my team, to give them opportunities to grow and thrive, to figure out how to bring out the best in them, and to learn how to respect them for where they are at.  I feel badly when I am not able to create that conductive environment for them, or when they choose not to run with opportunities I think that I have opened.  I try to understand my disappointment in myself as a manager who isn't always able to provide an ideal environment or to lift my team in the context of my expectation that as conductors they should be able to create this environment for each other, for our program assistants, and for themselves.  I try to balance this by being transparent in my efforts to bring a conductive approach to my management style, hoping that they too will be conductive with themselves and each other outside of the classroom, and wondering if that is an unreasonable thing to hope for.

It has taken me a while to have the confidence to start to voice this.  I know that there are going to be days and moments that are better than others and I'm a lot more okay about that than I was a few months ago when I started this job, with bright eyes, bushy tail, and rose tinted glasses.  Reflecting conductively helps me remember that as long as I am doing my best in any moment, it is the best that I can do, and thus helps me reflect more kindly on my own successes and challenges. I am so proud to be a part of a profession that has taught me to do everything that I do conductively, and so excited to bring my conductive approach and mindset with me as I step up and into my new role here.

Saturday, October 5, 2013

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.

Saturday, April 13, 2013

Reflections on life and death and love and happiness

Every once in a while you meet someone and for whatever random reason you seem to already know each other - your souls seem to recognize each other - and you are able to connect and form an instant, deep friendship that exists in a realm beyond the superficiality of most casual acquaintances.   I felt this when I met MC a few months ago during my ocean swim training- I think that he probably has that effect on many people. He went out of his way to take care of everyone when we were swimming in the ocean and we all knew that he was caring for his beloved partner in her final months of a long and awful battle with colon cancer.   Though I've only known MC for a few months, I had an overwhelming urge to be at his beloved's funeral earlier this week.

Many in my swim squad had the same instinct - and we were all so glad we could be there for MC.  We had no way of knowing how his beloved's ex-husband and his family would dominate the funeral, no way of knowing that our urge to be there to support MC would add so much balance for him, it was just an instinct that being there for him was important.

Funerals by nature inspire deep reflection and I found myself thinking about Frank Bailly.  My grandmother was very proud to say that she had only ever said 'I love you' to two men - my grandfather, and Frank Bailly.   My grandparents had a fantastic, happy marriage.  My grandmother was absolutely beautiful, incredibly intelligent and articulate, and fascinated by people and the stories they would tell you if you dared to ask; she was an editor of a magazine and was well known.   My grandfather was the most wonderful of men, with this child like love of life that was beyond contagious, and to this day I feel his spirit in the fun moments of life.  My grandfather hailed from a family of legendary longevity, so everyone was shocked when he died young and suddenly of pancreatic cancer. No one was more shocked than my beautiful grandmother who spiraled into an angry and very dark depression...until Frank entered - or shall I say re-entered the scene. 


Frank and my grandmother had wanted to date in highschool but were not allowed to court due to a difference in religious backgrounds, and he went on to have an wonderful happy marriage and was a well known big band tenor saxophonist.  His wife died around the same time my grandfather did, and as widows my grandmother and Frank enjoyed a few years of a loving courtship.  They hit the town, dinners and concerts and theatre and music halls.  When my grandmother started to get sick Frank stayed by her, and even at the end he lit up the nursing home with regular visits and kept her company during her more lucid moments.

I was thinking about Frank at the funeral earlier this week, hoping that at my grandmother's funeral he had people around him supporting him, and that my family was suitably grateful, respectful, and honouring of the love and happiness he had given my grandmother in her last years of life.

My friend MC was trying to reach an enormous fundraising target of $10 000 through sponsored long distance runs and open water swims before his beloved passed, as a living tribute to her and a way to honour her.  He and his beloved were not cynical about cancer research -- they believed that she had an extra four years of life because of medical treatments and that these four years gave her precious time with her daughters and a chance to meet her granddaughter who was born on her birthday a few months ago.  

This drive, this determination he showed under circumstances where he might have wallowed in helplessness reminded me of DB, a client and good friend of mine with cerebral palsy.  I was remembering DB from a few years ago when he was trying to cope with his mom's pending death, also of cancer.  

I had know DB for several years at this point, and in all of the years I worked with him previously he had been happy to do things to help him maintain his ability to get into and out of his wheelchair but was happy not to be pursuing any sort of free standing or balancing due to hip and back pain.  Suddenly one day, standing up from his wheelchair unassisted and being able to stand and balance independently became a very important priority to DB and we started working feverishly and determinedly towards this, eventually achieving it.  I asked him why after all of these years this was suddenly so important to him, what had changed?  

His answer was mind blowing and humbling.  DB remembered how happy it made his mom when he learned to stand after years of hard work with an incredibly uncooperative body.  He knew she was dying, and was respectful of her choice to have no further treatment after a long and difficult battle.  He felt that if he could stand at church he could make her happy.  It was his way to offer a living tribute, to honour her, to do something positive for her in her final days.  

I have told this story previously in public presentation under the context of understanding the  motivation behind a goal, the why behind the what, looking at the bigger life needs and individual reasons that something might be important to somebody.  And I recognized DB's why in the fundraising my friend MC was doing -- the need to do something positive, to honour, to pay tribute when helplessness was not a satisfactory response.

I was thinking about DB and about MC was inspired and moved by their ability to turn sad situations into something positive, to lift people when they needed it most, and to serve the people they love instead of being trapped in their own grief and helplessness.  I hope that if there is ever a need for me to be that person, I can find the strength to get past my own issues and find focus on doing something that will honour and lift, or bring happiness to someone who needs it.

MC is still fundraising for Cure Cancer Australia - to donate and help him continue to honour his beloved, please follow this link:


MC - this your beloved's favourite song was so beautifully performed at your beloved's funeral; I hope you don't mind me sharing it here.  My thoughts are with you friend.

Thursday, March 21, 2013

When conducting is Trying...

I have been working with Miss M for almost two years now; she is a young adult who had a terrible fall while overseas a few years ago, and she has been left with a rather nasty brain injury.  Miss M is one of the most personally and professionally challenging people I have had the privilege to conduct, and even in a month where we have had some ridiculously incredible functional breakthroughs I find myself unsure of where I am with her and having internal conflict after virtually every session.

Miss M has an incredible full-time carer, L, who Miss M and I are extremely lucky with.  L is fantastic with Miss M - she has a very close and loving relationship with her that I am able to work through, yet is able to be objective, firm, and work with 'tough love' where Miss M's parents can't.  L problem-solves with me and and reinforces the work done in CE sessions -- and when things don't go well, we help pull each other through the muck.

There is no getting around it; acquired brain injury is complicated -- especially when physical disability is accompanied by impairment to behaviour, personality, memory and other cognitive functions.  When I first started working with Miss M, I saw so much potential for regaining functional mobility but was not sure if I was going to be able to work around her behavioural and cognitive impairment.  I was not sure to what extent the behaviour was a result of the brain injury or was something that she had learned to use manipulate and control her circumstances and the people around her since the brain injury.  The behaviour drastically impacted the presentation of the disability, so much that the physical impairment and the physical disability were incredibly mismatched.  She yodelled and shouted jibberish as her main source of communication; otherwise she just parroted what was said.  She cried and shrieked with 'pain' when anyone even mentioned touching or moving her hands, feet, or legs, so no therapy or splinting happened, and as a result her hands and feet are amazingly contracted and deformed.  She had a very violent and aggressive streak that had required no provocation.  She was not interested in actively participating in CE or therapy; not motivated, and refused to take part.

And yet she knew every word to every song, including recent pop music from after her brain injury, and we could sing together.  Once I got over my own hang ups about what is appropriate when working with adults I found that through children's song and play I could interact with her and sometimes get her to do things with me; I frantically went through my notes from my student years in nursery and school groups looking for appropriate songs, added in 'camp songs' and pop songs and other movement games and suddenly there was a relationship.  And with that relationship came my expectations around behaviour - not just with Miss M, but with her amazing family and wonderful carer as well - and with expectations and goals around behaviour came change - both good and bad -- think of a full strength adult hitting the 'terrible twos'.

We are working teach Miss M that being violent and aggressive is not acceptable -- she is strong, has good motor control, and is unpredictable and dangerous.  At first this behaviour seemed random - no provocation required.  A previous therapist had in fact capitalized on it early on -- rough play and play fighting was the only activity she would take part in and that was how he helped her find her body and movement after the accident.  Now, by holding her down, restricting her movement, repeatedly telling her that she was hurting me (and yes I have had my share of bruises and scratches and bites and hair pulling and pinching courtesy of Miss M) I've started to see that she can stop being agressive if there is consistency around this.  But more, I saw that she could learn - when I intercepted her aggression she would burst into apology and tears.  I also confirmed that she could be manipulative - while she was apologetic and teary I would drop my guard and she would attack again.  I also started to see that the violent behaviour was not random - frustration, confusion, pain, being frightened, being over something, needing some physical space were all triggers.  Miss M has a very short fuse; and when she loses control she can't yet reel it in.

Now we are working to teach her that saying sorry and crying isn't enough, she has to choose not to repeat the behaviour -- and we are making progress.  However, in some ways these improvements have made the behaviour harder to manage.  We have seen intention and purpose in her rage -- this is incredibly hard to work with because we know that it is not just random brain injury lability, but directed violent anger -- very different.  There are good days, days when we work well and have no fighting.  I know that once Miss M loses her temper she is out of control, but because I feel that Miss M understands what she is doing and that she knows she is not behaving nicely, I feel my own anger rise when dealing with hers.  It is very hard to physically restrain somebody who is attacking you when you are also managing your own anger and trying to be professional and appropriate.  If she is on the floor or in her wheelchair I can move away; if we are in the pool or balanced on the edge of a plinth, my duty of care doesn't allow me to step away and I have to restrain her to protect myself while keeping her safe and managing my own temper.  And I'll be honest -- I sit in the car and cry after these days.

When I say we have seen ridiculously incredible functional breakthroughs I am not exaggerating; in the last few months we have seen exponential improvements in spontaneous communication and vocabulary; we see memory and refection where previously there was none; we see the beginning of an ability to understand that there was an accident, that there has been a brain injury, that we are trying to help her get better.  Miss M has gone from from swimming only with floaties and someone right beside her to independent swimming on her front and back.  She has learned to roll onto her stomach (or more precisely to tolerate being there) and from rolling onto her stomach in a matter of a week has learned to get up onto her knees and to crawl, and from there to pull herself up into high kneeling and onto a plinth or the lounge.  The other day she was in high kneeling and tried to put her foot on the floor as if to stand (if only her feet and ankles weren't so terribly contracted!!!).  Her body is remembering what she used to be able to do and latent abilities are presenting gob-smackingly rapidly and spontaneously -- it is like watching normal deelopment in fast foward.  And when these things happen we celebrate  - Miss M's parents, L, and I all shocked and amazed, ecstatic to the point of tears, and Miss M caught up in the excitement of the moment.

And then I show up the next day, expecting to reinforce and repeat what we have achieved and Miss M will be in a mood, refusing to participate, crying, being aggressive.  When this was what I arrived expecting it was hard, but I was prepared, and it was what was expected.  But now I don't know what to expect, and I excitedly arrive, still on yesterday's high; we review videos so Miss M remembers and we get excited watching them. Then we try to do something and I get behaviour and refusal to try.  And I am heartbroken and disappointed even though I know that this is the nature of this brain injury and that this is a part of the process for Miss M.  And even though I know that any confusion, disappointment, frustration I feel is minute in comparison to the complex emotions that Miss M feels and has no real way of expressing.  My disappointment and frustration sometimes clouds my thinking, it feels personal -- we have a relationship that has allowed her to develop and exceed everyone's expectations; I'm putting everything I have into these sessions, and she can't be bothered to try.  And only hours later while debriefing with L, am I able to appreciate and understand and deconstruct what is happening, and to remember how far we have come, and to find energy to keep trying.

You've got to try...

Or perhaps this is more inspiring...  Try, just a little bit harder