“When we want to do something and find it difficult, there are always unwanted contractions due to unrecognized motivations that we enact.”
– Moshe Feldenkrais
Quote by Moshe Feldenkrais
Artwork by Tiffany Sankary
With my sense of self,
Intertwined seemingly indistinguishable,
With the development of another,
I somewhat cease to exist beyond the parameters,
Despite my best intentions.
How does one dedicate themselves,
To the greater good of another,
Without losing self?
And in its irony,
As the central goal pivots around,
Striving to best support him,
In finding and unlocking,
More of himself,
I seem to,
In equal amounts,
As time goes by,
Lose sight of another piece of me.
Who am I?
And will I find her again,
Or will the life path I’ve found myself on,
Simply lead me to another me?
A better me?
One that doesn’t have purpose of self,
But purpose of another,
For where does the line get drawn,
When I side step my responsibilities,
In giving him the best of life?
Certainly isn’t it,
Is it ten?
I find it hard to believe,
And that may mean,
I never truly find who I am,
In this world,
But must hope to find solace,
In the dance I do for another,
So he continues to know who he is,
And how to infinitely find more of himself.
And I’ll stare at him,
For a reflection of me,
Rather than look blankly,
At the face in the mirror.
The End of Chapter Eighteen.
Isaac has always been ambitious,
His opportunity to continually learn has helped foster this drive,
And generate his can do attitude.
And the cycle continues,
Where we help facilitate giving him more choices,
So he can gain more access to himself,
Learn more based off having more option to do things for himself.
And fundamentally limit the confusion in his system,
As much as possible,
As to which part of his body,
Is required at each movement,
And for which action.
The relay of information,
His processing centre,
Is undeniably affected from his brain injury,
As so we teach him,
How to break the patterns causing him the greatest amount of strain,
With the least amount of success,
So he can learn to send the messages through alternative pathways,
For greater triumph,
With minimal effort.
And while I continue to feel the dance change beat,
Moving from one groove to another,
Which has me somewhat in a spin,
Isaac and his practitioner fluidly waltz on,
In sync to a rhythm I do not hear.
And it’s beautiful.
And I trust in knowing that the novelty factor remains,
In order to keep Isaac’s interest,
While still addressing all the key elements,
Causing him the most restrictions.
Weight-shift seemingly becomes the key to everything.
A lack of ability to counter-balance,
Is in fact an inability to weight-shift in order to correct himself,
And that’s why we see his instilled pattern of shortening,
Or tensing in order to brace himself.
His arms too,
Are not used to catching him,
To take the weight in order to break his fall.
So on a balance cushion,
We can begin to show Isaac how it could feel,
To shift his weight effectively to counter balance,
How simply shortening on the side you’re leaning away from doesn’t help avoid the fall,
But rather lead from the head,
To shift the weight back in the opposite direction,
And how his arms can take weight to support him,
Because it is not their role to squeeze with undue effort to brace him,
But rather be fluid and free,
Available to straighten and prop when required.
Rotation another key element,
And while we can explore rotation,
And aim for rotation,
Across many orientations,
Initially the biggest preventing factor for Isaac continues to be W sitting,
As it locks the hips and pelvis,
Therefore the upper body has no pivot point in which to turn from.
And so the more side sitting and cross leg sitting we encourage to sooner W sitting can be eliminated from his repertoire,
And the more opportunity rotation has to become available to him whenever he should need it.
And once in these more advantagous seating positions,
It’s never about being locked or fixed,
The position remains dynamic,
Bringing in all the elements of weight-shift in again,
And showing Isaac just which parts of himself are required,
And how much freedom in movement can still be found.
A perfect extension from this sitting on his bottom in a casual lose cross legged position,
On the therapy table,
To find the dynamic movement,
Becomes a fun game of,
Dipping his toes over the edge and pulling them back in again.
Is another recurring theme that we continue to find difficult to instill in Isaac,
And as nothing yet has become natural to him within his daily life,
To truly boost this,
We must find new ways of teaching the muscle how to contract,
And manually contracting them through a knee bend to straight leg,
With in a dorsi-flexed foot position,
Is a great option,
because the reality is at this point,
We’ll take anything from them.
External hip rotation is also imperative,
For Isaac to continue to to find more of himself available,
Again moving away from W sitting is vital for this,
Cross leg sitting a must,
And also going back to a slow tummy crawl up the the therapy table,
While finding that full external rotation in each leg bend,
Opening the hips,
And stopping any pointed-toe thrust,
See’s it happen freely.
And as always things pay off,
And within days,
Isaac is fluidly,
Sitting himself in cross leg sitting against the lounge,
Equally as proud of his success,
As he is aware of how important this transition is,
For his continued development.
And I see just how from weight-shift,
To external hip rotation,
Elements of counter balance,
And propping through the arms,
All go into making this seemingly simple act possible.
And of course as always,
Which fills me with so much hope for the future,
Takes him far.
Because he believes in himself.
And despite his confused neural messages,
He knows who he is.
If only we could all be so lucky,
To know who we are.
The securing of Isaac’s first wheelchair,
Besides being loaded with personal conflict,
Was the subject of brutal beaurocratic conflict,
And despite my swag of unidentified emotions,
It will also mark the day where I found my freedom.
During the many months leading up to the purchase of his Ottobock Skippi,
A black and ugly battle unfolded between myself and the cerebral palsy organisation, Who processed our funding application for the power wheelchair,
Along very similar lines to the fight for Bio-flex AFO’s I had and lost,
Some months earlier,
But this time,
With so much more at stake,
From the two and a half year wait time we faced through the process,
To the sheer enormity of the price tag attached.
And so I wouldn’t accept defeat so easily this round.
The situation as it unfolded,
Recognise the inappropriateness of the wheelchair prescribed for Isaac,
Over two years earlier,
From its over prescription of bells and whistles,
Taking away the responsibility he has to himself to control his body,
So expertly learned over the five years of Feldenkrais,
To the sheer lack of age appropriateness,
Being an adult base much too cumbersome for a small boy.
Not to mention my realisation we were never actually shown any other alternative to make an informed and educated decision on Isaac’s behalf.
And so I did what I now do best,
Without missing a beat,
Finding a more suitable option for him,
Trialled on our own time,
At our own cost with our own therapists,
And when satisfied,
Went on to enquire directly to the funding body as to the procedure for changing a model of chair,
Which still meets their criteria,
To remain classified as the same application,
But fundamentally sees the purchase of a wheelchair that actually meets Isaac’s current needs.
I was greeted by them with no hesitation,
Simply the facts of an equipment review required to be submitted,
By the same organisation who lodge the application,
Outlining and justifying the change.
A very common,
Very realistic request,
Based on the wait-time,
And developmental change between the ages of two and five.
I was naturally incredibly relieved.
Until I wasn’t.
Of months of very little,
If any contact with the cerebral palsy organisation,
Responsible for the application,
With no follow ups directly relating to power wheelchair use whatsoever,
I thought they’d be both pleased for Isaac’s clear improvement beyond their prediction,
And for all the ground work I’d already covered in order to make the process as smooth as possible.
What I was faced with instead,
Was something very different,
And one that I can only describe as shocking.
I didn’t feel they were either qualified or in a position to argue against,
What clearly made perfect sense,
Having become less and less familiar with Isaac’s needs,
Was within protocol of the funding body,
And absolutely about meeting Isaac’s needs.
And yet here they were,
On the other end of the phone,
Saying Isaac had to have the previously prescribed chair,
With the undertone of “just coz, so there”,
Left hanging on the receiver.
An array of bad excuses following,
Including being unable to possibly allocate a therapist for an “entire new trial”,
And not having a therapist available to write an whole application review.
Despite my best efforts to express clearly,
That the trial had been done already by us,
That the chair is from a local supplier so therefore on a practical note very easy to arrange trials,
And just to sweeten the deal,
Based on previous experiences (AFO’S sigh),
Told them how much cheaper this new one was compared to the one they prescribed.
Still the iron gatekeeper would not budge.
I was confused,
Becoming very angry,
And yet helplessly at their mercy.
Many phone calls,
Some with me simply sobbing to the undignified point of begging,
That even if it wasn’t personally their usual protocol,
Wouldn’t they still do it,
If for no other reason than to make sure Isaac got what was best for him?
Especially considering I did have permission from the funding body directly.
And as it turned out a review and re-trial is required on any prescription of great value,
And with such extensive wait time from prescription to delivery,
So surely it wasn’t just me who could see the same amount of allocated therapist time would be applied,
Possibly even less based on the organising I’d already done?
Couldn’t they see that?
So I tried to jump through their hoops,
But they kept on moving them too fast for me to keep up,
Changing their excuses from one to another,
Seemingly depending on the time of day I called,
Or the person I spoke with.
Getting absolutely nowhere,
After weeks of back and forth,
I had no choice but to go over the local heads,
To the regional manager,
And eventually to state management directly.
To my utter relief and surprise,
At state level I was greeted with apologies,
With the promise this behaviour thrown at me,
Was both unacceptable,
Was an inappropriate flexing of authority,
For no justifiable reason,
And I had stayed well within my rights,
At the request.
And was left with the reassurance,
That they would personally direct the local group to follow our request,
And a promise the matter would be resolved promptly,
With no more challenges.
At that moment I crumbled with utter relief.
For the build up to that lifeline call,
I had reached the point of personal breakdown,
The turmoil of five years of battling to simply stay afloat,
In the daunting world that is having a child with cerebral palsy,
Had me beat,
And this conflict simply stole my remaining fight,
Took my last ounce of sanity,
And smeared it across the floor with a hateful sneer.
It caused me my darkest hour,
To smash porcelain,
Walk out on my family,
And run away like a coward,
Unable to face one more moment of the life I faced.
I’m forever grateful for the friends arms I was able to run into,
But damage had been done,
And I just didn’t know the way back.
The resolution coming just in time.
To deliver Isaac his power wheelchair,
And to open up the conversation of balance within our own family unit,
To sustain a lifetime of disability.
It took time to heal,
The damage done to me,
The damage caused by me,
But I could hold my head high in knowing I never gave up on what I knew was right.
For what was not only right,
But always had Isaac’s best interest at its core.
The freedom that followed was a gift,
As I completely severed ties with that organisation,
Which for so long I knew wasn’t serving us well,
Yet out of my own fear had me maintain alliances.
(Just in case).
But no more.
I still to this day cannot quite believe what I had to go through,
Am still gobsmacked at the purely unreasonable way they directed themselves,
Only to be so abruptly overturned by their own powers-that-be,
After one phone call.
And once more,
It is a blessing in a black cloud,
For we were unshackled that day we dissembled the wheelchair for the first time,
And stuffed it into the boot of our old Subaru Outback,
Driving away from an organisation who while stood waving shiny flags,
Chanting how helpful, caring and supportive they are,
How qualified and knowledgeable they are,
With a chorus of being there for the individual families,
Quite blatantly proved to us exactly the contrary.
So good riddance.
And we would never look back.
Because after all,
This is the face that it must always be about.
And from here on out,
I’ll advocate stronger,
And with more attention paid to who around him,
Is or isn’t living up to what’s in his best interest.
A month after his fifth birthday,
To the day,
Isaac gets his first wheels.
Despite my full awareness,
The lead up to it of many many months,
Logically it all makes sense,
I can rationalise it well,
Being a year out from starting school,
His fatigue limiting him to how far he can manage in his walker,
Giving him a sense of independence.
And yet I can’t help but feel I’ve failed him again,
By still landing at this reality,
All the hard work,
The constant commitment,
That we would be the ones to defy all odds,
And avoid a power wheelchair.
And the modifications to life,
That come with it.
But then I pull myself from my own selfishness,
And see it’s not about me,
It can’t be,
We will manage,
We always do,
With whatever alterations to our existence we must make,
Because for all those reasons of justification I can conjure,
Isaac needs this,
In whatever capacity he chooses.
And from the moment he’s back in the drivers seat,
The smile from ear to ear,
Says it all.
And the fact that we have to completely disassemble it,
In order to fit it in the boot to take it home,
C’est la vie!
We move succinctly through another hour session,
Filled by an array of exercises,
Directly addressing current need,
And yet as always,
Being opportunistic in the approach.
So versed on taking direction now,
So attuned to his practitioner,
The flow is seamless,
And productivity high.
From the moment he arrives,
Everything he does is to become familiar,
With his body,
Connect to more of himself,
Discover what it’s capable of doing,
And how to respond to any given orientation,
Or recognise what’s required of the body,
In order to perform any given task.
Sweeping from side to side,
Shows how one side can lengthen,
While the other shortens,
As well as how to lead from the top of the body.
By sitting to lie,
Isaac can get the idea his arms can remain free at a diagonal.
Alternating knee to opposite hand,
Using a bolster to prevent tightening of his tummy.
While the left leg has a very clear trajectory,
The right does not,
And tends to pull the left leg up with it,
As this leg is less familiar with this action,
And therefore requires more awakening.
Time over the bolsters allows Isaac to transition from all fours into sitting on his knees,
Without pulling the head back,
Or throwing his knees out from under him,
But rather see him push weight through his arms,
Freeing the shoulder girdle and chest.
And even the seemingly simplest of things,
Like interlocking fingers,
With palm to palm contact,
Needs to specifically be explored,
As it is not familiar,
But with practise the pathways to recognition can be formed,
And immediately the sensation is evidently thrilling to Isaac,
Who as always is so delighted to be able to find more of himself.
As every little thing pays off,
Leads him to more,
And by the sessions end,
He’s pulling himself into cross legged sitting,
With no more than the suggestion of back support behind him.
And I feel as though we have danced our way,
Through another important milestone,
Without even knowing the specific goal,
Because it all matters.
And the gesture of many movements,
As a learning tool to get familiar,
Becomes more evident than ever.
It’s always the team around me,
Who pull me from the depths of my despair.
Putting things back into perspective,
And helping me,
Continue to walk this path,
With a sense of purpose,
Or at least optimism.
All the questions we pose to Isaac,
In terms of his development and progress,
Apply to me,
Breaking the habitual patterns,
The vicious cycle of dominant biases,
Dictating our responses,
For me more so in my thinking,
Where for Isaac it becomes a physical manifestation.
I can still learn from him,
And do the best I can to lead by example,
Or at the very least,
Hold on to what those around me say,
And not lose sight on the bigger picture.
And despite my depiction compulsively sketching him walking,
What’s currently in his picture of himself,
Is now talking,
More so than ever,
As he continues to lose interest in his assistive communication app,
Opting virtually solely for spoken words,
But which are sadly more often than not,
Lost in translation.
And so the question as always,
We pose to him is,
Do you need that much effort?
The answer is invariably no.
But we then must address why excessive effort is caused,
To understand how to limit it.
And in terms of speech,
Isaac is creating massive amounts of undue effort through his neck,
Relying on his neck muscles for voice,
And for balance,
Which they should never be responsible for.
The result is voice becomes strained,
And virtually impossible.
This directly links back to his limited understanding of his pelvis,
And not utilising it as a base,
Or confident in its mobility to provide the support it is designed to,
So as a strategy,
Isaac then recruits all his upper body muscle,
Dramatically including his neck,
To find that support.
And with that increased effort,
Comes a fixed pattern of upper body extension,
Is virtually impossible,
As it has become so very foreign to him.
But our practitioner is determined,
To do all she can to create it,
And instill it in his repertoire.
And so flexion of the chest,
A long soft neck,
And gliding movable shoulders,
Are now paramount,
If we are to break the habits,
That are causing the extreme strain through the neck,
Preventing him from performing many upper body actions with ease,
But most importantly to Isaac at this stage,
Its hindrance to his speech.
Because he has so very much to say,
And we certainly want to hear it.