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'.

Wednesday, December 7, 2011

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 --

Saturday, December 3, 2011

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.