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.

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.

information overload

As we continue to incorporate patching Isaac’s left eye,
Into his therapy,
And daily routine,
In hope of bringing more awareness to his right side,
It occurred to us that despite only allowing him sight through his right eye,
If given a kaleidoscope to look into,
Or a small postal tube to look through,
He didn’t appear to actually be seeing what we were asking him to look at.

Despite Isaac’s behavioural optometrist having long since confirmed his vision in both eyes as equally accurate,
And right on age appropriate.

As we delve in further to this new speculation,
It is explained to us that vision or sight,
Is quite different to processing information,
Thus truly seeing it.

And for a right eye,
Having always been overpowered by the left eye,
It becomes highly possible that the difference between them,
Is due to the right having had less practise.

And therefore,
When asked to do the job alone,
With the left patched,
It may simply struggle with information overload.

Becoming easily overwhelmed,
And fundamentally unable to process all the information,
And virtually not seeing what’s in front of it,
Despite looking at it.

So therefore a kaleidoscope for example,
Being very busy with its multiple shapes and colours,
Various patterns,
Is too much to process,
And we should think about starting with one that only has two colours in it,
And a single shape.

Hidden picture games,
Another perfect example,
Like Where’s Wally,
Is too great a challenge for the right eye alone at this stage,
And we should consider a much simpler version,
To truly allow the right eye to start processing the information,
Of where is the object,
Distinguishing it among distractions
.

It is also important to eliminate any additional challenge,
Like visual-spacial awareness,
And hand eye coordination first too,
To avoid further overloading Isaac’s system,
So in a sorting block game,
Use a maximum of four or five coloured blocks,
And by first asking him to select the yellow block,
Using both eyes,
To allow the physical components of reaching,
Grasping,
Lifting,
To become settled and easier,
Then go on to patch the left eye and continue the game,
Giving the right eye its turn.

Patching the left eye then becomes a supplement during sorting tasks,
And the strain so to speak,
Or the challenge,
Doesn’t become his spatial awareness,
His ability to find,
Or pick up the block,
But about processing the information,
Thus really using his eye,
To decode which block is yellow,
Not simply where is it in space.

It’s about adding incrementally,
To the levels of information the eye/brain,
Can cope with,
And over time the games difficulty can be increased,
However always being sure to allow time for both eyes to establish the task together,
While addressing his body’s fine motor challenges,
Before patching the left.

It all comes back to the more Isaac does with his right eye,
And right side of his body,
The more positive reinforcement is received,
Sending the messages to the brain to keep increasing its ability,
As a part of himself to be used not simply for sight,
Because we already know he has the perfect vision.,
But as a tool to pass on vital information.

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While once again I’m fascinated,
By the sheer number of elements that play their role,
In giving us basic fundamental independence,
And ability,
I am again overwhelmed by the pending sense of more.

More things to rectify,
More tasks to squeeze into our daily lives,
And just more knowledge loaded onto me,
Which I myself must process,
In order to give him the best shot at life.

I really start to get a true sense of the meaning,
Information overload.

And I feel like crawling under the doona,
For a big long quiet snooze.

resourceful/a perfect word

And then like a gift,
We get the “t” sound for the first time post surgery,
And we all jump for joy,
Isaac fully aware of his accomplishment,
And his sense of pride rightly written all over his glowing face.

Considering his tongue has no deviation from the midline at all,
Therefore no side to side,
And very little lift to the roof of mouth,
His repertoire of speech,
Is remarkable really,
A testament to Prompt therapy,
And Feldenkrais,
But more notably to his determination,
And ingenuity,
For utilising what’s available to him.

While the confusion is apparent,
Within his system,
In thinking tongue going up,
Is throwing head back,
It is in its own way very resourceful.

And that is probably a perfect word to describe Isaac,
As he continues to find his way,
With the odds stacked up against him,
From the very start.

Our work in helping uncover more of himself,
Giving him more available to use,
Is far from over,
As we just now begin to see more clearly,
How breath plays a vital role,
And a challenge for Isaac,
How having a long neck is paramount,
To releasing the jaw and tongue,
For clarity in speech,
And how the effort he continues to exert,
As way of doing,
Is his greatest challenge of all.

And ours to rectify.

tongue work

But despite the upward climb,
As always,
We must be grateful for such willing resourcefulness,
And the type of cooperation,
Which allows us to continue to explore,
How best to support his growth and development.

dance down the path of diversity

As the hours of therapy continue,
Exceeding more than I could possibly fathom,
We can see we are building back up,
Slowly,
But steadily,
From where he fell,
After his adenoid-tonsillectomy.

Speech therapy has been grueling,
As Prompt shows him again how to form the shapes and sounds,
So devastatingly lost.

And it does pay off,
We almost have “done” back,
Such a powerful part of his vocabulary,
Despite the jaw and tongue still having lost the separation/differentiation required,
For clear pronunciation,
And the Da sound sounding more like Na,
We power on with more optimisom,
Than we’ve had since the profound loss.

And the growth is not isolated to speech,
It’s been,
As always,
A combination of all that’s been learned through Feldenkrais,
A sense of reduced effort,
Finding a way to minimise the challenge,
In order to perform with ease.

But every step is still a learning process,
For us,
As much as Isaac.

He guides us,
As much as we guide him.

We seek out Botox again,
For injection in his Gastrocnemius,
Soleus,
Hamstring,
And this time his right thumb to see if we can help it become part of his body imagine,
Because we don’t have all the answers,
We’re still in a trialling process,
To see what helps,
What doesn’t.

But we know we will once more face a neurological shift,
Post injection,
As his sense of self is altered again,
With a new organisation of his system,
Muscles he utilises the best way he can,
Knocked off,
In an attempt to allow others to have their turn.

It’s always risky,
It’s never going to be a magic cure,
That answers all his challenges,
We need to explore the pros and cons constantly,
Of his equipment,
His choices in movement,
What drives him,
What he desires,
As well as what we desire for him.

I am undeniably tired,
Tired of the twists and turns,
The complexity that is a compromised nervous system,
The unknown,
The speculating,
Tired of the constant search for the ideal,
Ideal equipment,
Ideal way of incorporating therapy into life,
Ideal balance between mum and therapist/advocate/carer.

Tired knowing that there is no finish line.

But what has always outweighed my fatigue,
Is my passion,
And my belief in Isaac.

It’s the tonic that injects the energy to keep me going.

And frankly,
If he can keep going the way he’s going,
I’ve no reason to complain,
And everything to gain,
From him,
With him,
For him.

Surprised by how quickly we’re nearing the end of another year of Isaac,
A year of such highs and lows,
It really must become a sum of all the little things.

The little improvement to his walking himself around the therapy table,
The grace at which his lying-to-sit now flows,
Or his cooperation at allowing our practitioner to work on his tongue and neck which not so long ago was far from tolerated,
Or the increased ease at which he sits with feet tucked beautifully under his bottom instead of wide in W sit,
And more impressively how he told me he was going to sit this way all by himself,
How he wanted to show me,
And so he did.

How every session we are getting closer to uncovering more lost parts of himself,
New ways to turn,
To look,
To reach,
To twist,
To pick up,
To drop,
To sit,
To sit to stand,
To roll.

We dance down the path of diversity,
With one constant goal,
To fill in the gaps.

Mostly I’m so absorbed within it,
I forget to look up,
But occasionally,
I have moments where I take a step backwards,
Outside of myself,
And see,
Just how phenomenal his progress,
How extraordinary his journey,
And how far he still continues to come,
Through this incredible therapy,
Supportive community,
And without question through his superhero attitude.

feet under bum dec 2015

And suddenly,
Despite the list of emails I need to write,
The grants I need to apply for,
The suppliers I need to line up for equipment trials,
And the preschool meetings I have to attend,
I don’t feel so tired anymore.

I simply feel humbled,
And blessed to be on this road with him.

the gift of clapping

And sometimes it’s just the simplest things in life,
That become so important,
Then become my undoing,
And highlight in an instant,
Just how much we take for granted.

While I hold close to my heart,
That despite a lack of clear speech,
He can in his compromised mix of voice and sign,
Tell me what it is he wants.

When I cannot deliver,
For him,
To him,
The knowing can feel excruciatingly worse.

As here he is,
Knocking on the door of five years of age,
The sweet innocence of a child,
Yet having always seemingly held more confidence,
And been more capable of dealing,
With the things he cannot do,
Or may never posses,
Than me,
Asking me,
Almost begging,
With tears welling his beautiful dark eyes,
Why can’t I clap?

Why isn’t it working Mummy?

And not just the act of one semi open hand,
Connecting with a virtually closed fist,
But a palm to palm slap,
With the ringing out of that distinct thwack,
All too familiar to us,
All too readily available,
So incorporated into our society,
So expressive,
And suddenly,
This matters,
To him,
And he wants it.

And my heart breaks just a little bit more,
At such a humble request.

And breaks further at not being able to just give it to him.

For he may as well be asking me to cure him of CP,
Because however seemingly small this act,
It’s just as far out of reach.

And I can see his devastation.

And it rattles me to my core.

We help him create the sound by “clapping” one hand to his bare knee,
And while brings him some joy,
Just doesn’t cut it.

He knows it’s just not the same.

And I feel like this is the first time he’s stood outside of himself,
And questioned why he can’t do something,
And the let down is real.

The realisation stings,
Him,
And me.

And while I vow to continue to help him,
Whatever it takes,
To work towards achieving it,
It cuts deeper,
This moment,
Symbolic in some way,
Of how I never want him to feel,
Ever in his life,
Never lacking,
Never unable.

But I know I cannot promise that,
I cannot take it all on for him,
So he won’t have to,
Only time will tell,
Just how he manages to wade through his own murky journey,
Either turning it into sunshine or mud,
And how he tackles this life.

dec 2015_clap post

But for now I weep,
Because all I want more than anything,
Is to give him the gift of clapping.

And to make sure the smile,
Never fades from his eyes.

what is balance

As Isaac continues to offer himself up to the learning process,
I too strive to understand how all the little things we do with him,
Will in fact piece together the bigger picture.

I feel confident in understanding that the effort invoked,
Is Isaac’s biggest fall back,
Too much effort resulting in loss of ability,
But ultimately,
As I see him improve,
I still cannot seem to envision if all the elements will fall into place,
And one day allow him to walk.

Because as much as I love,
And admire him,
Support him unconditionally,
I continue to strive for life on two feet,
For him,
(And honestly for myself too).

And in venting my displacement,
To our practitioner,
At how seemingly far Isaac is from standing unaided,
And how I simply cannot see how he will ever find his balance,
She poses me with a seemingly simple question,
What is balance?

And to my surprise,
I actually have no clue.

And so it goes,
When I sense a pending impart of wisdom,
I grab my pen,
And scribble frantically in my note book,
The key elements outlined for me,
As way of answer to this valuable question,
And furthermore,
To give sight once more to my blind stumbling.

What is balance?

Knowing where you are in space.

Being able to move your pelvis, head and feet in relation to each other – collaboratively.

To correlate with your eyes and inner ear.

Timing – being quick enough in movement to correct oneself so not to fall.

And for Isaac specifically,
It’s the proportion of challenge verse threat,
If the risk is too great he loses balance,
But if for example we begin to introduce “pushing back”,
By nudging him gently to counter balance,
It allows him to get the idea of correcting where his puts his weight,
But without invoking the effort.

Having recently grasped how fortunate we are,
In how well Isaac has already ascertained to a certain degree,
Where he is in space,
I now also see just how many intricate movements Isaac has also developed,
An anticipation to move within his environment,
Allowing him to casually moves his arm out the way as we adjust his armrest height,
Or in sitting as he effortlessly straightens his legs then bends them again blissfully oblivious to trying or effort.
All which assists him in building that relationship between his pelvis, head and feet,
To correct himself in movement,
As the slightest adjustments become spontaneous,
Without thought,
And with practise a faster response time,
Which may just lead him to finding his balance in standing and walking.

On a practical level we are doing all the right things,
With many more to still address as they present themselves.

Eye patching again is one,
As is moving away from variable movements that challenge him too much,
Which has become clear of his R82 Crocodile Walker,
With its heavy weight,
Its arm gutters that bring tension to his neck and shoulders,
As he relies on his arms to walker rather than his legs,
In an attempt to control the unforgiving swivel,
And his learnt posture of being hunched over in all his efforting to direct himself accurately.

And we really need to aim for him to be standing tall,
With pressure going through straight arms,
And weight through his legs,
Like required in the use of crutches,
Or the light-weight Kaye Walker we have on sliders at home,
With no swivel,
Requiring him only to negotiate his forward stepping,
And which we’ve made into a front (anterior) walker for ease of use,
To encourage the “push” through the arms,
Over the constant “pull” of his default pattern,
And invoked further by a posterior walker with arm gutters.

We aim to move Isaac away from the understanding that being upright,
Is leaning of his upper body,
But rather a distribution of his weight through arms (to stabilise and remove fear) and legs (in hope of truly finding them),
With his chest up high.
Which we can explore at the therapy table,
And with crutches,
Until we find a more suitable walker for outdoors as well as in.

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We find ways of beginning to introduce the counter balance,
With the softness of a small bolster,
And the safety of standing at the therapy table with our practitioner,
With the ideal result of sheer joy,
And no fear.

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We bring in ways of Isaac finding flat open hands,
To push through the palms,
In secure sitting so all other elements are eliminated,
And the focus is purely on a new sensation of weight going through the arms,
With straight elbows.

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And the patching once more helps break the bias of the left dominant eye,
In hope to help release neck and shoulder tension,
And to shift the pattern of only turning his head to the right.

All these components,
While seemingly unrelated to my under-educated eyes,
Are in fact what makes up balance,
And without them pieced together,
Becoming spontaneous,
Effortless,
Virtually subconscious,
Standing or walking independently,
Could not be possible.

And I suddenly feel,
So much better for knowing so,
And optimistic for what could possibly lie ahead for Isaac,
Despite how far he still has to go.