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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is it CE? YOU tell ME!

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

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

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

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

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

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

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

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

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

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

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

Pounding the Pavement and other Life Lessons

Yesterday I went for a run -- I run, but I don't love it; there are other things I'm much better at and would prefer to spend a sunny afternoon doing, but yesterday was different.  As I ran, I enjoyed the feeling of my legs moving beneath me as they moved me around Narrabeen Lake and appreciated being able to run.

I remembered back to the first fun run I ever did, a 5km run fundraising for the Achilles Running  Club, a Toronto based running club supporting runners with disabilities.  Though only 5km, this run was a real struggle for me, and at some point during that run -- perhaps when a runner with a prosthetic leg or a blind person being led by a running guide or somebody pushing a wheelchair ran past me as I puffed and panted along -- I decided to get better at running.  I remembered back to my half marathon - I still remember the 'of the moment' contempt I had for the person wearing a shirt that said "the pain is temporary, the glory is forever".  I remembered to look around at the beautiful place where I was running, to notice the ducks and geese and kayakers on the lake, to run and smell the roses so to speak because yesterday's run wasn't about my running or my fitness, but about KH getting out and about in his scooter, something he hadn't done in years.

KH had done half of his hard work already - it is a very difficult for him to transfer onto his scooter and then back into his chair that he uses at home hence it being years since he had been able to go scooting, but we had agreed that an outing would be awesome for our last session.  I have to tell you I've never seen a scooter quite like this - probably 20 years old with a little light switch to flick for forward or reverse, big crazy handles for steering like an old Harley Davidson.  When I took the cover off of it I actually doubted that it would go at all.  KH had asked (via his AAC) me how my running was, but I was more worried that I wouldn't be strong enough to push it if it choked en route.

Off we went -- and yes I had to jog, run, and sometimes even sprint to keep up with him, especially on the wide flat path around the lake, and even on the bush trails that were barely wide enough for the scooter.  Kids stared at us, not the usual curiosity filled way that kids often stare at someone with a disability, but in the 'that's so cool' way adults look at a cherry red convertible mustang  -- KH's wheels were by far the biggest and coolest anywhere around.

As I said, I enjoyed my run, spurred on by KH's sounds of glee when I couldn't keep up or started getting puffed, wanting to keep up with him to witness his enjoyment of the day, to be close enough that if he wanted to say something I could get his communication aid out for him.  I was grateful that I had worked on my running enough over the years since my first fun run that on KH's day out he didn't have to be held back by my limited running ability - and also grateful that KH wanted to stop and look at things so I had a few seconds here and there to catch my breath.

As I ran, I remembered SE learning to drive his very fast chair with his very limited right hand so that he could learn to play wheel chair tennis; he needed to hold the racket with his left hand which was normally his driving hand.  SE -- the mischievous show pony that he is -- ran me hard that day too, in a little park where the session could be watched by my colleagues, clients, and acquaintances.

As I ran, my mind drifted to other random fun moments I've had with people in wheelchairs.  Not CE moments, but just random slices of life moments.  I thought about getting trackside at the Indy 500 with MG; I though about SP after a few drinks taking her wheelchair down a small set of stairs where a portable ramp had been a few hours earlier; I though about the fun CW and I had while she was learning to cross busy roads in her new foot driven wheelchair; I thought about KW bringing a batch of his very special brownies in on his birthday to enjoy with the rest of  his MS group (yes I'm serious - all 5 of them were off chops and giggling through the whole session); I thought about getting around the wild markets of Hong Kong with M&LD; I thought about KD getting her wheelchair stuck in a pile of woodchips while geocaching in a cemetery; I thought about training FG for her Antartica adventure that included climbing down a ladder into a zodiac to get to the icebergs; I thought about YG coming out to cheer my dragonboat team on wearing her team shirt and hat; I thought about SP in the back of an ambulance on the way to hospital with breathing difficulties suddenly coming good when she realized how sexy the doctor treating her was.  As I ran I remembered my grandmother in her wheelchair, friends with several teenagers in her neighbourhood.  The kids came to shovel her driveway or help with the garden knowing that she loved rock concerts could take a carer with her - Ricky Martin, the Spice Girls, Savage Garden were amongst her favourites.  This is the same grandmother who concluded that people in wheelchairs don't get hugged as much as other people so decided to change that, throwing her arms up and insisting that everyone (the mailman, the bus driver, everyone) hugged her.

As I ran, spurred on by KH's vocalizations, laughing as KH waved at admiring kids we passed by, I thought about when I first met KH (detailed in my previous blog posting); that first day I got caught up in his disability and circumstances but yesterday I was hanging out, having fun, celebrating being alive with an amazing person.  I'm forever grateful for the amazing people I encounter in work and in life, and for the free attitude adjustments they offer.    And, I'm grateful for clients who become friends, who let me into their lives, and who share their moments of adventure and misadventure with me.

http://www.youtube.com/watch?v=Bw1KdIDRwww&feature=related

Conducting when it's Confronting

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

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

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

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

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

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

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

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

A 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

http://www.youtube.com/watch?v=C-PNun-Pfb4&feature=related

A letter to my personal trainer alter ego from my inner fat kid

I have been battling my little demons for the past several weeks; having ridiculous and self defeating conversations in my head, hashing through everything over and over again.  Avoiding mirrors, not feeling good in my clothes let alone my skin, not wanting to be at the gym, sabotaging my efforts to get back in the saddle.  I was home for a few weeks; I had mentally prepared for a few weeks of being out of my workout routine and made good on my commitment to myself and to my personal trainer about being sensible about food choices most of the time and having a few guilt free holiday indulgences.  I did not plan for a random shoulder injury and a few more weeks out of the gym when I got back here while I rehabbed, and I lost it a bit.  Food cravings creeping back in out of nowhere; week night sneaky drinks; cheat weekends instead of cheat meals.  A couple of kilos -- and no, not muscle gain; not gaining brain weight from added wisdom -- a percentage or three more body fat.  In the grand scheme of things no tsunami or war or sudden loss of a loved one I keep reminding myself but in my personal and private little hell it has been frustrating and devastating.

I usually have a darn tooting good attitude about myself as a personal trainer -- my clients see me go up and down and know that I'm human, and know that I understrand their struggle because from my personal experience I know how hard it is.  Been there, done that, bought the x-large t-shirt, worked hard and figured out what worked for me, traded it in for a med t-shirt, now take my hand, I can help you do the same.  In fact I have had many referrals through the gym from people asking after 'the not skinny trainer' -- and I have had good giggles with another trainer whom I work with who is a champion figure sculpter, we know our physiques attract clients to our business for very different reasons.  But when I am in a negative headspace, when my inner fat kid waddles to the surface of my conscious mind it all stops being funny.  Before I was a personal trainer I could go to the gym and throw around the weights to escape; put on my grumpy training face and my invisibility cloak and workout in the anonymous comfort of my little world.  As a trainer I can't be invisible; I can't even be grumpy.  And when I am indulging my inner fat kid I don't want to work out, feel like everyone is watching me and judging me, feel hypocritical working with my weight loss clients, see myself through the fat kid's warping mirrors and round and round we go on the merry-go-round of self destruction -- weeeeeeee.

I have finally backed my inner fat kid into a corner and am feeling considerably better;  life is back in perspective, I am eating well and training again -- heck I can even get through my affirmations and gratitudes without argument or interruption from that nasty fat kid in my head.  But DF said I should publish this because people will relate, and HH said I should finish writing it to help me get it out of my system -- both are wise women, both have battled themselves on many an occasion, and both will have to accept my edited version because some of the things that my inner fat kid was saying don't deserve to be published.

Fat Kid - Hey PT Lisa, can I talk to you, I'm having a rough time over here
PT Lisa - Oh no, not you again.  Hey don't you have a personal trainer?  Can't you talk to Chris about this?
Fat Kid - Yeah but I can't talk to him -- I'm too embarrassed; I'm sure he's already seen me all fat again and is already disappointed, and he'll just say let's get back into it and I can't train with him until I'm already back into it and I don't want to let him down...
PT Lisa - Hmmmm -- as I recall Chris is always supportive and amazing when you talk to him.  Can't you talk to Alexander?  I'm sure I heard him call you beautiful today, he'll make you feel better?
Fat Kid - He's just saying that to make me feel better and anyway I tried -- but I'm just making him crazy and besides he doesn't understand, he just has to look at a gym and he is perfect.  It's easy for him.
PT Lisa - Wow.  Not even Alexander eh?  I guess I can go through this with you for the millionth time.  Sighs.  Hang on a minute -- I'm going to need a strong coffee before I deal with you
Fat Kid - Skip the coffee -- let's go for beer or ice cream -- I know a good place.  I'm over this; I'm tired of fighting with myself, I'm tired of falling off the wagon and having to get back on, maybe I'll just give up the gym and the lifestyle and the personal training and open a gourmet ice-creamery
PT Lisa - That's not very helpful now, is it.  It's not really what you want, you are no longer at home when you are the Fat Kid -- it you were you would be happy and wouldn't be harassing me in the middle of the night.  And besides, you know you get sick when you eat ice cream these days.  What do you really want?
Fat Kid - I want to get to a point where a few weeks doesn't matter this much, where I don't fall off this badly and do this much damage, where the years of work don't get chucked in the bin by a few weeks of being off of my game.  I want it to be easy.
PT Lisa - You know it is simple, but will never be easy.  It will always come down to daily habits, daily choices, food and lifestyle.  It will always be a fight, a balancing act between lifestyle and indulgence, and sometimes indulgence will literally tip the scales and you will have to get the balance back.  It would be easier if you could keep your attitude in check...
Fat Kid - Hey! There's nothing wrong with my attitude! It's just not fair, that's all.  Why should I have  to 'fight to get the balance back' when other people can just cruise.
PT Lisa - Reality check.  Life's not fair.  And of all the unfair things life can deal, really Fat Kid, really?
Fat Kid - I know.  I know.  Reneg. That was pathetic, even for me.
PT Lisa - You know what will make you feel better?
Fat Kid - Yes. No.  Don't say it.  You are going to tell me to go to the gym or have a salad with flaxseed oil or something
PT Lisa - Wow.  You really are not ready to take this on -- maybe we should do this another time?
Fat Kid - Yeah sure, maybe next week or next month.  But you better give me your credit card cause by then I'll need to buy a closet of fat clothes and a few tubs of ice cream.
PT Lisa - Nothing wrong with your attitude at all -- carry on.  I'm out of here
Fat Kid -  No wait.  Sorry.  I'm listening.  What will make me feel better?
PT Lisa - Other than a workout and a salad with flaxseed oil?
Fat Kid - Ha ha!
PT Lisa - Get out of your head; give yourself a break from you for a few minutes or even a few days.  Do things that make you happy, relax, walk on the beach, laugh, have fun, lay off.  Stop being so nasty to yourself, be kind, be where you are, clear your head, and decide where you are going, gear yourself up and as HH said get the motivation and the headspace and the goal back in line.    Get back on the wagon.  And for heaven's sake stop busting Alexander's balls, and call Chris and ask for help.  Work on your affirmations, work on your headspace and the rest of you will follow.    
Fat Kid - (getting teary)
PT Lisa - But first crank this song, dance around like a lunatic, and for heaven's sake smile! (This is for all the bum chums and sisters out there)

http://www.youtube.com/watch?v=yDSK91mUNLU

"Don't write a check with your mouth that you can't cash with your ass"

Wise man from 'Sucker Punch'