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.

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.

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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.

value of breath

We take for granted the value of breath.

The role it plays in optimising everything we do.

And for Isaac the conscious act of breathing,
Particularly taking inhalation upon request,
Remains foreign.

And proving an even more challenging thing to teach,
Despite both his Prompt Speech Therapy and Feldenkrais sessions working collaboratively to demonstrate the principle.

For the more Isaac’s drive to talk becomes apparent,
So does the restrictions placed on its progress due to lack of breath.

His body becomes tight and constrained,
Limiting sound,
And fluidity in facial movement,
And body function,
As the effort to speak without breath dominates his system.

In order to produce words,
One relies on the cutting off of air flow,
In conjunction with tongue, jaw and lip movement.

Yet for Isaac he’s relying virtually solely on the jaw,
With some tongue,
And a slow increase in lip involvement,
But almost no airflow.

It isn’t a new phenomenon for us,
We’ve seen it developing since speech for him began,
Although it’s become more obvious,
More impeding,
As he tries desperately to expand his vocabulary.

Ideally we want to begin exploring inward and outward breath without sound,
Or excessive body movement,
To begin to help Isaac feel where the breath comes from,
And how the breath isn’t an act of efforting,
But the concepts are currently far too advance.

And as a result it becomes apparent that we must first support the current position,
Or his systems current utilisation for speech,
In order to first limit the effort within his chosen approach,
And then work towards changing his positioning/body’s response,
To optimise talking.

But it cannot happen all at once.

In lying him down we are able to first simply take the load off,
To allow Isaac to feel that the jaw is separate from the neck extensors (which shorten the neck),
And rest into a comfortable position conducive for exploring this,
Effort free.

Once it is acknowledged that his go to position of head dropped back,
Chin stuck out,
In he attempts to speak isn’t either helpful,
Or his only option,
Then we move to next progression,
Of limiting the head throw back,
Tucking the chin,
And lengthening the back of neck,
While hopefully maintaining his new understanding of how his jaw and lips can work,
In other positions like sitting or standing.

Possibly trying with hands above head while lying may also be of benefit,
To free up the body,
Allow weight-shift to occur,
Just like we see when walking with Isaac,
If we remove the pulling or squeezing through his arms, neck and shoulders,
He actually begins to utilise his legs more effectively.

Same may occur in allowing him to truly use his jaw, tongue and lips,
By eliminating the possibility of him using his whole upper body,
In an attempt to talk.

When it comes to incorporating word practise,
Some words are easier to focus on,
As the sound in themselves requires airflow without active breath –
“Up” is ideal,
For the voice is already exhaling somewhat to create the “ahhh” sound,
Followed by the sudden lip closure cutting air off for the “p”.

The same concept applies for other words,
“Out”, “hat”, “hot”,
But in contrast it’s the tongue responsible for cutting off the air to create the “t”.

We also begin to introduce other fun games,
To explore breath,
Like blowing empty patty-cakes across water,
Playing whistles,
Or making bubbles in water with a straw.

The challenge is that very few games have a cause-and-effect,
For the inward breath,
But all these activities only work if there is air in the lungs to exhale.

So all very worthy exercises to embark on.

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So we will endeavour to facilitate Isaac’s understanding of breath,
And optimise positioning to greater his ability for speech,
While remaining mindful of fatigue,
As always,
For challenge is beneficial in producing progress,
But only without threat,
Which simply hinders development.

more of himself/to get up and go

The transition from arm gutter walkering,
To straight arm walkering was far from instantaneous,
Beyond the arduous search for a suitable replacement walker,
Isaac had a long way to go,
In finding his ability to stand tall,
And utilise pushing his weight down through his arms.

The consistent hunching over arm gutters,
And ongoing effort required to manage the R82,
Was instilling an undesirable gait,
As well as a constant reinforcement of sagging low to the ground,
As his idea of walking became more and more about his upper body,
Rather than his legs.

And so all the work begins around his shoulder girdle,
Neck and chest,
To soften and allow movement,
Which in turn can make possible his ability to release the arms,
And have them be available as props for stability,
Rather than the main drivers of walking.

For Isaac to find his height through his legs,
He must learn to raise his bottom,
And develop the weight-shift from hip to hip,
As he steps.
The bonus byproduct on those moments when he finds that elevation,
Is a straight knee and a heel reaching the floor.

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And on those instances,
When his true height is realised,
He’s elegant in his stance,
A posture sparking excitement,
An ease about his being.

But so far it’s only fleeting,
And the exploration of his diagonals,
The idea of counter balance,
His rolling,
The concept of dorsi flexion,
That ankles can have agility,
A sensory feedback through the sole,
Ways of pushing through his heels rather than forefoot,
His pelvis mobility in standing not just crawling or knee walking,
His ability to move from flexion to extension,
All must be realised,
All must become part of him,
So the lower limbs can become truly present.

And useful.

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And generally we seek to formulate new ways of having him utilise his legs,
In his daily life,
In an array of upright orientations,
Whether it be on an indoor balance bike,
Or discovering leg wraps for standing practise,
Which becomes less about straightening his knees,
And more about facilitating his bottom to raise up.

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And his ever present default to thrust backwards,
Always on our radar to break,
And different ways of coming forward,
Continue to infiltrate his sessions,
And his daily tasks,
Moving him ever so gradually away from the locked imobility of w sitting,
To side sitting,
And cross legged sitting,
To open up the possibility of forward,
Of asymmetry,
Of a base that gives to future movement,
Rather than impeding it.

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Giving him the options,
We fundamentally seek to allow him to understand the differences,
Between his actions,
Whether going from small to tall in sitting or standing,
Or coming forward from backwards,
Going from sagging legs to straight legs,
Sitting to standing,
Swinging legs from left to right,
Reaching or pulling,
The trajectory we want to be clear.

For now,
However much remains muddled,
And so we continue to redirect him,
In hope of establishing more permanent pathways,
And therefore more of himself,
To get up and go.

chasing unicorns 

The hunt for the perfect piece of equipment,
Feels like chasing unicorns,
An impossible,
Never ending,
Mythical endeavour.

More specifically this time,
Finding Isaac an ideal walker,
An anterior one to allow him up-and-go access,
And help him move his weight forward when walkering rather than leaning backwards,
One that moves him away from the arm gutters,
Is light-weight enough for him to manoeuvre efficiently,
Without undue effort,
Has swivel limiters on front wheels so he can control the turn,
Anti-reverse so the variable directions are reduced,
A seat for resting,
Optional hand brakes so he can stop himself if need be,
And park it when coming up to stand or resting,
Be narrow so his hands are in a realistic position in relation to his body and not splayed out,
Can be used across indoor and outdoor terrains,
Have height adjustability,
And fold for transportation.

As his R82 Crocodile,
No longer meets these needs,
And with every passing day,
Is causing him to use too much effort to negotiate,
Negatively altering his gait pattern,
And Invoking a very pronounced elbow pull-back,
And shoulder tension.

Resulting in increased spasm.

And so with due diligence,
As always,
I do my research,
I organise trials,
With any supplier willing to work directly with a parent,
And yet we come up short.

We work our way through the Marcy Schuchmann,
The Yogi Ottobock,
Kaye Anterior Support walker,
Rifton Pacer,
And others,
Finding the sheer heaviness of some unfathomable,
The width mind-boggling,
The lack of anti-swivel a deal breaker,
No optional brakes frustrating,
Or the positioning worse,
No seat,
Or badly designed seat,
Won’t fold,
Only for indoor,
Or only for outdoor,
And the list goes on.

The disappointment,
And frustration,
Starts to fester on me like an incurable rash.

I wish to take parts of one walker,
And bits from others,
And combine them into the perfect piece.

If only.

We even go so far as to have his R82 modified by a local metal fabricator,
And a team in the metal work department at TAFE generously donating their time,
But we simply cannot manufacture in retrospect,
To make it meet Isaac’s needs,
Too many elements cannot be changed.

And I’m tired,
But the pressure building,
To capitalise on Isaac’s current state of determination,
Becoming more apparent,
As the clock ticks on,
With still no solution found.

Wishing that it didn’t have to be this hard,
And that organisations who are designated to take this burden away from parents,
Like me,
Actually did their job,
And knew a child well enough to find that golden egg.

But my faith in the system,
Has long since dried,
And I know by knowing Isaac better than anyone,
And with the guidance of our practitioner,
We will do a better job than any.

And so I put my head down,
I dive back in,
And after much deliberation with suppliers,
I manage to trial a Kaye Posterior Four Wheeled Walker,
With the secret anticipation of simply switching the wheels to convert it to an anterior walker.

And by being willing to compromise on brakes,
A seat,
And all-terrain wheels,
We are finally satisfied,
We can at least address the majority of our wish list,
By somewhat modifying our own walker,
And deliver the best option we can for Isaac,
To stride off into a brighter tomorrow.

Which he does,
As always,
With pure style.

kaye walker may 2016

And it only took six months (sarcasm).

real desire

Four weeks post Isaac’s latest Botox,
We see the best results to date after injection.

There is a softness to his movement,
When walking assisted,
The tightness is gone,
The habit of pulling himself downwards with tense efforting absent,
And it seems the body’s sense of calm has returned.

Some clear goals present,
With this current nervous system;
To weight-bear through the arms in an array of positions using Isaac’s body weight,
With the aim to move away from arm-gutters on his walker,
To a taller straight arm stride.

Sit-to-stand with focus on coming forward,
Long tall tummy,
Anterior pelvic tilt,
To help him in the all important sitting,
And also the vital action of transitioning from sitting to standing,
Without thrusting backwards as has become so familiar to him.
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And standing tall through a raised bottom,
Which is fundamentally the true action for coming into straight leg standing,
And how getting a flat foot to connect with the floor possible.

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And to find dorsi-flexion in the feet,
Which remains very foreign to Isaac,
So we start exploring new way to achieve it,
And one being placing a tennis ball under the ball of his foot,
And rolling the ball around in all direction,
To move in and out of this unfamiliar position,
All the while giving invaluable sensory feedback through the sole of the foot.

With the true benefits of his hard work evident,
Through this soft sense of self,
And the way Botox has further allowed him full foot contact to the floor,
I’m sparked with great excitement,
As not only are we seeing an ideal muscle-skeletal alignment,
We are also witnessing the first real desire from Isaac,
To be up on his feet.

Responding to the idea that they may still,
Become part of his body image.

Yes we are a long way off,
But we don’t miss a beat,
Installing ballet bars throughout the house,
To create an even more supportive environment,
To help capitalise on this phase.

And the reply is pure joy,
And determination.

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And while like everything CP,
This may or may not last,
As history has shown us,
Nothing is guaranteed,
And yet in moments like these,
I cannot help but swell with optimism,
And grab hold with both hands to the possibility that,
He’s going to do it.

Defy the odds.

And well frankly,
In my eyes he already has.

But we will continue to reach for the stars beyond.