Thank Feldenkrais!

A road much travelled, but on no ones road map – Cerebral Palsy found me when my son was born – we might have prayed to Buddah or to the universe but we Thank Feldenkrais everyday! This is our journey.

his best interest

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,
With them,
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,
Had us,
Isaac’s team,
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.

Simple.

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 no.

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,
The best,
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.

And yet,
Still the iron gatekeeper would not budge.

I was confused,
Frustrated,
Becoming very angry,
And yet helplessly at their mercy.

Many phone calls,
Some heated,
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?

Apparently not.

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,
Unprofessional,
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.

the legend april 2016

Because after all,
This is the face that it must always be about.

And from here on out,
I’ll advocate stronger,
Wiser,
And with more attention paid to who around him,
Is or isn’t living up to what’s in his best interest.

c’est la vie

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,
I’m uneasy.

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,
After everything,
All the hard work,
The constant commitment,
His dedication,
And mine.

Wanting,
And believing,
So badly,
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,
And more,
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.

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And the fact that we have to completely disassemble it,
Immediately,
In order to fit it in the boot to take it home,
Well…
C’est la vie!

get familiar

We move succinctly through another hour session,
With ease,
Filled by an array of exercises,
Directly addressing current need,
And yet as always,
Being opportunistic in the approach.

Isaac,
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.

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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.

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By sitting to lie,
Isaac can get the idea his arms can remain free at a diagonal.

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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.

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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.

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And even the seemingly simplest of things,
Like interlocking fingers,
With palm to palm contact,
Elbows touching,
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.

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As every little thing pays off,
Every connection,
Every orientation,
Every sensation,
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,
Gracefully,
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.

Thank Feldenkrais!

lost in translation

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,
And positivity,
Or at least optimism.

And ironically,
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.

But nevertheless,
I can still learn from him,
His sessions,
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,
Very quiet,
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,
Where flexion,
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.

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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.

a stealthy opponent

The reality of five hits me like a tonne of bricks,
As I suddenly admit I’ve unknowingly,
Or perhaps simply secretly,
Placed all my expectations,
Onto this age,
As if drawing an invisible line,
That once reached,
Would see us cut through the ribbon,
Arms in the air in victory,
As Isaac walks himself independently across the finish line.

So convinced,
I evidently had become,
That this was the magic number.

The fall back to actuality is hard.

And abrupt.

Because denial,
Dressed up as hope,
Is a stealthy opponent.

Easily catching you,
Completely by surprise.

And the realisation of my own stupidity,
Equal to the shock.

Because I thought I was closer to acceptance than that.

I thought I understood more clearly,
The gravity of his injury,
The extent of his disability.

But I am mistaken.

Turmoil,
Plastered with a fake smile,
To help conceal the scars.

I do love him,
I promise,
I do.

With all of my being.

But today I loath,
His disability more.

For what it has taken from him,
And for what I seemingly cannot accept.

And therefore muster up,
In order to survive it.

dreamland

Ripping me out of any peaceful,

Naive,

Dreamland,

To a cold and brutal truth.

a short holiday

Before I know it,
Isaac has turned five,
And suddenly looking more grown up than I dare to admit,
Yet still sporting his commendable attitude,
And infectious smile.

With a willingness,
He glides,
Into another year of being.

Having returned from a full four week break from sessions,
And despite the treat of lazy morning starts,
And a sliver-taste of freedom
His delight at the reunion is evident,
Further testament to his relationship with his practitioner,
And his positive association to therapy.

But like always off the back of time away,
Things within Isaac’s system have gone awry,
More slightly it seems the more skills he gains,
But amiss nevertheless.

And as predicted,
Suddenly those extra hours off,
Just don’t seem worth it,
As I feel my heart rate rise with the all too familiar wave of anxiety.

This time,
His pelvis mobility is all but gone,
And focus is given to refinding it.

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In sitting on the therapy table,
With comfortable foot support,
He explores coming forward and back,
Tummy needs to be long,
Billowing out,
Arms forward,
Not pulling back in his default pattern,
Which can be disrupted by holding a tube and pressing it against his practitioner,
With a strong base,
And free arms,
Movement can come from the pelvis.

The emphasis on rolling forward at the pelvis,
Will furthermore correct his neck and chin,
With the least muscular contraction the better,
Giving his head the freedom of mobility we desire,
As if it’s balance on top of a stick,
Soft,
Movable.

This all happens from the pelvis.

And thankfully,
It is within the hour Isaac discovers his pelvis again,
And we can breath a little easier,
In knowing that all the work on his pelvis over the last five years,
Has really paid off.

Yet the chest and shoulder girdle do not release so easily,
As the lack of pelvis mobility over recent weeks,
Has further lead Isaac to efforting through his upper body,
As he continues to believe,
He needs to stabilise himself with his shoulder muscles,
The result being restricted movement,
And increased stiffness.

While the relationship between his shoulder girdle, neck and chest,
Has never been clear,
It now has become extremely foggy,
And it becomes apparent,
It is fundamental,
He stop recruiting them for all his actions.

bulldozer crawl

Bulldozer crawling helps,
Among the magic of Feldenkrais hands,
Working to release and separate his chest from his shoulder girdle,
And allowing Isaac to find a long neck,
And soft free arms.

neck work march 2016

And by the end of the hour,
The freedom in his neck is clear,
The pelvis also still mobile,
And while the shoulder girdle and chest require many more sessions,
And break the pulling-arm bias,
And the unrelenting over recruitment of upper body muscles,
We continue down the right path,
In having seen how the hard work is paying off.

Despite elements going on a short holiday,
Along with the family.

Spike the curiosity

Therapy.

Stretching out in front of us,
Like an open commanding sea,
Expansive,
Overwhelming,
No end visibly insight,
Simply joining the sky,
Beyond forever.

My own sense of its magnitude,
I reason however,
Could only pale in comparison,
To how it must feel for Isaac,
To be continually directed,
Dictated to,
Piled with expectation.

And yet I learn,
From a therapist point of view,
That with therapy,
If you start from the assumption that you will teach them something,
(To what degree will depend on what that something is),
But by starting with that concept,
The child will realise they are to learn something new,
How to do things for themselves,
Spiking the curiosity,
Invoking a desire to learn even more,
And are therefore inspired further to do more for themselves,
Wanting to explore their environment,
To be liberated,
And keep the cycle of learning going.

And suddenly it doesn’t feel like therapy,
But more like a gateway to greater possibility.

New is exciting,
Different is stimulating,
Independence is freedom.

And Isaac thrives off providing him space to learn,
By showing him what else might be out there to discover.

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And a very special bond is developed,
Between teacher and student,
One of mutual respect,
Filled by a zest for learning,
And a joyful anticipation for each pending session prevails,
Over any sense of resistance.

And that is how we are going to sail through this voyage.

The End of Chapter Seventeen.