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.

good old reassurance

The moment when all the puzzle pieces fall into place,
Fills me with an overwhelming sense of achievement,
I can only imagine how rewarding it must feel for Isaac.

Learning as we know,
Is never linear,
We’ve not simply followed a preset path,
Ticking off the crossroads as Isaac’s passed them,
Moving smoothly along to the next.

And not everything he’s acquired along the way,
Has stuck,
As we’ve discovered,
With sickness,
Medical interventions,
Fatigue,
Over stimulation,
Or the acquisition of a new skill seeing the loss of another.

And we’ve all had to insert patience into our DNA.

So when everything falls into place,
After months of attempts,
Trial,
And error,
Adjustments and readjustments,
It is the most beautiful thing.

A spirit lifting tonic,
Boosting hope,
Confidence,
And that good old reassurance that what we are doing is working.
(And we can never get enough of that!).

And the best part of it all,
Is when it comes completely unaided,
Unprompted,
And with the greatest of ease.

And this is exactly what we saw on one mid May morning,
As we’d made our way into the therapy room,
As had become a built-in part of our lives,
But this day was to be special,
Not that we’d known it yet.

Isaac walks in with our practitioner,
As usual,
Up the stairs with care to shift his weight across each leg as he climbs,
Along the deck,
Wiping his feet ceremoniously as he goes over the door mat,
And making his way over to rest in standing,
Facing the therapy table,
Stabilised by both hands propping him on the tables surface.

 And then it happened.

In our usual flutter of removing coats,
Dropping bags,
Retrieving note pad,
And phone for photos,
Isaac hoicked his leg up onto the therapy table,
Followed by the other,
And in one seamless,
Effortless motion,
Spun himself around onto his bottom,
Shimmied himself forward,
Then sideways,
Until he sat tall,
Legs dangling over the edge,
And with a look satifiaction,
Broke into a smile ear to ear,
And plastered an expression that read,
Well, what are you waiting for?
Let’s get started!

It all happened so fast,
We stared at him a little stunned,
Until it sunk in,
And we joined together in shrieks of laughter,
And giggles of glee,
As we acknowledged the monument of the moment for him.

And the beauty in which he moved.

And we bear witness once again,
To the realness of his progress,
The success in which he is tracking forward,
And the skills that have found their place in his system,
Allowing him a greater sense of freedom,
And the ability to now so easily do,
That which he’d been working on,
Or rather doing with assistance and guidance,
For many many months,
All by himself.

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And I’m so proud,
I think I could actually burst.

And I know he feels it too.

Bravo boy’O! Bravo!

What will you achieve next?
I have to wonder.

The End of Chapter Twenty-Two

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pure pattern

We never use pure patterns.

We don’t go through life in either flexion,
Or extension,
Or rotation,
Or side bending,
Or coming forward,
Or going back,
Alone,
But rather a constant combination of some,
All,
Or many within our whole system.

For Isaac,
His upper back is prone to stubborn extension,
With his persistent pull back of the arms (particularly the right),
And his chests seeming reluctance to curl,
Rarely finding flexion.

While his lower back,
In contrast,
Is virtually in a constant state of flexion,
Curling his lumbar spine,
Having great difficulty finding anterior tilt of the pelvis,
In order to achieve extension of the lower back.

And neither of these,
As dogged defaults,
Are advantageous for his function,
But rather hindering his progress,
If isolated as his only option.

For his upper body,
It makes using the arms virtually impossible,
The shoulder blades don’t glide as required,
For freedom of movement,
In multiple positions.

And the lower back,
By preventing the much needed release of the steadfast tuck,
So much becomes more difficult,
Like the ability to find a long tummy,
To make sitting feasible,
The production of voice,
The freedom to swing the legs,
Or weight-shift,
Among so much more.

And so we must find
(Somehow, with the help of Feldenkrais)
The ability to move in and out,
Of either,
Use a combination of both.

To extend in the lumbar,
While flexing the hips.

To drop/curl/soften the chest,
While lengthening the side of the trunk to allow the shoulder girdle to move into all kinds of positions,
To break the locked-chicken-wing habit.

I can finally see,
How the formulas are perfectly imperfect.

And how my mindset that extension is the enemy,
Is only warranted as a pure pattern,
Working alone.

And how I might have been waving my flexion pom-poms a bit too avidly,
Without seeing the bigger picture of it being problematic,
Also in isolation.

I begin to stitch together another piece of understanding,
And see just how it is we rely on fluidity,
A flowing of movement.
Of not one,
But multiple actions,
Orientations,
Positions,
Gliding into one cohesive eased function.

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And by having all the angles,
The twists,
And turns,
Is how the patchwork of doing,
Is made possible.

But re-threading the string of habits,
As we know,
Is no easy alteration,
Or quick-unpick.

But one,
For Isaac,
We must continue to sew,
Over time,
With consistency.

just let him

I continue to be amazed,
At just how the action,
Or rather the inaction,
Of one part of the body,
Influences the rest,
And the impact it has on function.

Six years in,
And I just keep discovering,
Like a gift,
With infinite layers of wrapping.

And I’m fascinated,
As well as infuriated.

As we wind deeper into the forest,
Unearthing challenge after roadblock,
Of what is Isaac’s compromised nervous system.

For the path through brain injury,
Is so complex,
And how lucky we are,
The neuro-typical ones,
To mostly swan through life,
Capable of taking most of our doing,
For granted.

And it seems,
Ironically,
The more function Isaac uncovers,
Wrapped up alongside it is another set of obstacles.

And while we are over the moon,
With every inch of progress,
Even if opened with hindrances,
Some days I throw both ups-fingers at CP gods in despair,
And scream just give the guy a break!

Just let him rest both arms long effortlessly by his side,
Just let him find pelvic tilt for keeps,
Just let him weight-bare through his elbows,
Just let him nod his head forward tucking his chin to chest,
Just let him retain a long belly in sitting,
Just let him shift his weight without invoking spasm,
Just let him reach his arms out without the biceps contracting them into a pull,
Just let him be rid of the incessant fatigue that makes everything harder,
Just let him find all the words he wants so badly to say.

Just let him have it all.

And I know,
That as we move beyond his six year old comprehension,
And into a more mature understanding,
The dialogue will become freer,
And therefore the conversation will flow into movement,
As the ability to follow direction,
Explain function,
And offer feedback,
Machetes back the weeds into a clearer path.

And we can already see,
How the increased use of his power wheelchair,
Has offered him much needed respite.

But still he must always take the long way.

No magic spell can let him be free to move as he could have without an ABI,
That the road we are on has no final destination,
But is a continual journey we must trek,
In order to find out just how far it can lead,
Regardless of the relentless cockspur clawing at his skin,
Trying to hold him back.

And who knows,
Perhaps he will go even further in spite of it.

And I continue to be thankful,
That the path we are on,
Is with Feldenkrais,
Offering him the pass-the-parcel that comes along for the ride,
With a prize in every layer,
And an answer for the potholes.

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And while I detest the phrase but with all considered,
I know it has its place when referring to Isaac,
For what could have been,
In stark contrast to what he is;
The wonder boy whom is a gift himself,
And whom makes the darkness of the overgrowth a little less scary,
As he flashes his pearly white smile,
Blankets me constantly in his warm comforting demeanour,
And leads the way forward.

an extension/not limiting

One term into his first year of school,
And things begin the change.

And not for the better.

Since the start,
I’ve been bound by anxiety,
From the fear that the shift in daily routine,
The change in momentum,
The sudden lack of time,
The new focus,
Would impact negatively on Isaac’s development.

But the onslaught to his system,
Is greater than anticipated.

And the tightening response in his body,
Is the most powerful we’ve seen to date.

And the loss in function is evident.

The tightness around his heels and achilles tendon is new,
So much so that Isaac complains of pain,
A first.

His arm function declines,
As he becomes increasingly locked around his entire shoulder girdle.

His legs are barely holding his weight,
Not to mention the drag his stepping has become.

And not surprisingly,
His drooling is profuse.

(The feeling of never being able to wade out of the quicksand,
That sucks us back time and time again,
Is profound,
Stubborn,
And defeating.

And that’s just how I feel.

I can’t imagine the emotions Isaac must confront.)

Our only answer,
(Which comes with mixed emotions,
But has to be better than the alternative,
Of continual loss of function)
His power wheelchair,
And its virtual full time use at school.

And so the commencement of term two,
Sees him start back in his Skippi.

And I shouldn’t be surprised,
That he takes it like a champion,
Embracing it from the get-go,
And swarmed by his posse of faithful fans (girls),
Creating an air of fame around him.

The limited use of his power wheelchair,
Up until this point,
Means it’ll take some time to refine his driving skills,
And build his stamina,
But will hopefully lead to overall better management of his tone,
And progress in quality of walking,
And an ease in movement,
As the fatigue factor is eliminated,
Or at least drastically reduced.

And while I have to battle my own expectations,
And acceptance,
I’m reminded,
Of just how well Isaac is doing regardless,
How confident he is becoming,
And how simply happy he is.

Schooling me once more,
In how we cannot rate value by the sum of the quantity of doing,
But rather by each single execution of quality,
And to never measure against the norm.

wheelchair athletics

And I now see,
That Isaac’s power wheelchair,
Must become,
To some degree,
An extension of his self image,
While simultaneously not limiting it to its confines.

the one we ought to be having

The concept of symmetry rears its head again,
As does the ever growing ugly presence of muscle length,
Which are both thrown around the clinical platform like a football.

But symmetry and muscle length,
Have not been Isaac’s primary concern,
But rather one of organisation.
But despite articulating myself as clearly as possible,
The message is never truly recieved.

The functional element is never actually on their radar.

But it is always on ours.

To have each side of the body doing different things,
Rather than being in symmetry,
Is key.
One side lengthening while the other shortening,
Weight going through one hip joint,
Through to one flat foot.

Just like in walking,
The body weight doesn’t stay evenly centred.

And in standing,
It isn’t about Isaac’s hamstring length,
Responsible for the bent knees,
But a combination of organisational gaps,
And the demand of balance.

We can find the length,
Just not in standing.

As Isaac needs to be at ease.

And so we do our best to block out the noise,
Of what is seeming more and more like the banter of bygones,
When there was nothing else to offer,
But talk of structural alteration,
And focus our attention to asymmetrical half kneeling,
With rotation.
Rolling.
Bridging one legged,
And walking up the therapy table on your back.

We get dorsi flexion in lying,
With a straight leg free movable leg.

We have Isaac grabbing his feet,
Curling into a ball,
Bridging and swinging his hips from side to side.

We utilise bolsters to seek out head control,
Which leads to balance,
And the idea of being responsible for where ones head needs to be in space,
To maintain balance.

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We use a wobble disc in sitting,
To promote the idea of controlled falling,
And correcting,
Or righting oneself,
With the use of arms to prop,
And the heads ability to lead directional change.

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And we continue to search for the ever elusive flexion of the chest,
And a long neck.

And without question,
The idea of coming forward remains ever present.

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And we focus on what it really looks like to come upright into standing,
How the bottom is responsible for going backwards and up,
And by eliminating the demand of the upper body,
By resting forward on the table in front,
We witness the most beautiful organisation of barefoot standing we’ve seen to date.

And by becoming familiar and confident with this organisation,
We see just how it leads into adding the top half into the equation once more,
While the lower half maintains form and function.

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Everything we are chasing for Isaac,
With Isaac,
Is about function,
About his organisation,
And very little if anything,
To do with his structural symmetry,
Or muscle length.

And I have to wonder,
When will this conversation end?

Where by they begin to look at his function,
And not his measured scores.

Sadly I think I already know the answer.

Never.

But that will not stop me,
From starting and restarting,
And repeating the new conversation,
The one we ought to be having,
In order to truly help the Isaac’s out there,
Have the optimal approach to therapy,
And get the absolute best out of life.

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Because for darn sure,
They deserve it.

the ones worth talking to

It’s really hard as a mum,
Who has predominantly spoken for her child,
Translating the wondrous things he has to say,
In order for others see he does understand,
He does have a response,
So they too can see,
Just how witty and funny he is,
How smart and kind his words,
To then suddenly stop,
In order to help him find his own voice.

But you must,
Because you suddenly become very aware,
That it has had an impact,
In that he now only turns to you to answer people,
Looking you in the eyes,
Rather than them,
Seeking you out as his default.

Which only makes it harder when you’re not there.

And builds on others misconceptions,
That they don’t need to talk to him directly.

Strengthens peoples fallacy,
To disregard him as his own person.

Beyond the incredible frustration he must feel,
For constantly being overlooked,
I’m suddenly deeply saddened by the role I’ve played,
In unknowingly supporting these misunderstandings,
By way of taking his voice from him.

Unintentionally taking his control from him,
By often assuming his answer,
And speaking for him,
Before he’s even had a chance.

Unsuspectingly not respecting him enough,
To allow him the element of time,
To show him from the very start,
That there is no rush in gathering his thoughts,
To find the words,
And to project them with sound,
With control,
With clarity.

And that those patient enough,
To wait,
And listen closely,
Are the ones worth talking to.

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A lesson,
I’m certainly willing to work at,
In order to learn.

So I can be supporting his growth,
Not stunting it,
So I can help infiltrate a changed perception,
For the better,
When it comes to people with differences.

So I can make sure he’s always heard.

So I can be worthy of hearing him.

And be the first to stop,
To listen.

To absorb who he is,
And what he has to say.

The End of Chapter Twenty-One

 

guess what daddy?

We’ve always known schooling would never look the same for Isaac,
As it does for other kids.

We’re on a journey that is deeply intertwined with multidisciplinary therapies,
A road that is taking us on many alternate paths,
With constant hurdles,
Some we can spot up ahead in the distance,
Anticipating its approach,
Others crashing into our lives,
Abruptly throwing us off course.

But we’ve never entertained any other option,
Than to simply keep going.

With one ultimate goal;
To give Isaac every opportunity to do,
And be part of everything.

Believing/understanding/acknowledging he has the capacity,
The right,
Like any one else.

It’s just a matter of getting creative.

Thinking outside the box.

And being willing to alter the shape of the mould.

So when Isaac’s first every school cross country was approaching,
(Where his exclusion was never an option in my mind or his),
It seemed only natural for me to suggest that he ride his bike,
Along side his peers to participate,
Rather than sit on the sidelines.

Isaac was thrilled by the idea.

The school,
While initially skeptical,
Came around quickly,
Upon outlining its merits,
And its feasibility.

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Needless to say,
The race was a huge success.

With me weeping and whooping on the sidelines,
With pure joy.

Word even filtering back to me that another child,
Wheelchair bound,
Had said “I wish someone had of thought of that for me when I was in Kindy”.

And filling with a combination of pride,
And sadness,
I had to agree.

It is up to us,
To make inclusion for children of all capacities “normal”,
Possible,
Simply by being a little more adventurous,
With our approach to life.

And with a smile he couldn’t wipe from his face all day,
And still bursting at the seams with excitement,
As his Daddy comes in the door from work that evening,
He yells down the hall;
“Guess what Daddy? I won!”

And I challenge anyone who begs to differ.