subtlety

“Any force greater than the minimum needed to perform the intended action will interfere with your child’s progress.

The more you can create the conditions for your child to perceive subtle differences, to feel more of what there is to feel by ensuring ease and comfort – that is, by reducing force and excessive effort – the more the brain can change and (the child) will improve.

Subtlety – is one of the most potent and immediate ways to increase creativity and intelligent action exponentially in.. your child”

Quote: Anat Baniel – Kids Beyond Limits – page 116

life pause

The blanketed comfort,
Of home.

Where we stay,
Secure by the removal of choice.

Validated in its absence of accomplishment.

A Legitimate,
Life pause.

Like a long awaited holiday.

New read in hand,
Hammock strung,
Laughing children,
Devouring a rainbow of fruit,
Warmed by the safety of their proximity,
Content by the ease of simplicity.

A goal of merely being.

A truly rare gift.

But the strangeness,
Of such an abrupt life tilt,
Begins to taint rose coloured glasses.

The appeal of pyjamas-all-day,
Is soon replaced with a simmering panic,
Of treading water,
Over and over,
Making no gains.

Purpose confused.

Direction diverted.

Lost is the feeling of satisfaction,
Niggling in its place,
Is the yearning to move forward.

Structured days,
Covering the cracks below the surface,
That seemingly didn’t heal as completely as thought.

Not without constant demand,
So days don’t drag their feet,
Or present time to dwell,
Yet you can’t quite shake the feeling that you’ve lost your footing slightly,
And your sense of self is suddenly off-balance.

It’s wrapped in the dread of week after week,
Of cancelled therapy,
Routine ingrained in my own sense of purpose,
As much as it is written directly into Isaac’s progressions.

My life-line for nine years,
An addict for it’s reassurances,
The balm soothing the constant burning need for him to keep learning.

It’s smothered with the irrational,
Yet is the pulse of my life,
Once removed,
I feel the suffocation begin.

And all else becomes much harder to enjoy.

The four walls begin to close in,
And I’m scrounging for the sense of fulfillment I’d become accustom to.

And yet media cannot remind me more,
Of just how fortunate we are where we are,
That we’ve remained healthy,
Safe,
Cared for.

Perspective,
Loud and clear.

But the derailing of your internal freight-train,
Does impact,
Becasue of,
Despite of,
A global pandemic,
So I reach for what is a steadying,
Stable rock,
And that is Isaac.

While contact therapy,
Is replaced by Zoom meetings,
Or not at all,
His fierce longing to see his friends,
And get back into the classroom,
He takes it all in his stride.

Tech savvy,
And a curiosity to learn,
Across whatever platform possible,
I just have to marvel,
Time and again,
At his resilience,
His utterly inspiring life-take.

And for a nine year old boy,
Who only learnt to walk five months ago,
Who now knows how many moons each planet in our solar system has,
How long it’ll take our galaxy to collide with another (roughly 4 billion years! phew),
Or that that galaxy is called the Andromeda,
What a prokaryote is (first life on earth!),
Or that fruit flies were the first animals sent into space (1947!)
There is no life pause.

Because every moment of every day,
Presents wonder,
The never ending opportunity to learn,
To share as many new-found-facts as humanly possible, 
Or take a walk around the neighbourhood in the sunshine.

(And I will never ever get tired of writing those last words,
Or thanking you, Isaac,
For every lesson you have ever or will ever teach me).

where do we go from here

Rightly so,
Isaac’s self image dramatically changed,
The moment he took those first independent steps.

Now,
He is someone who walks.

He’s rarely succumb to sadness,
For what he could not achieve,
Barely questioning the unique workings of his body,
Over that of his more-able-bodied counterparts,
And instead rather tactfully fending off external provoking’s as to his difference,
With strength of holding his own,
(“It’s just the way I talk” age 5.)
While always tolerating,
The constant intervening,
And swagger of demands that are life with CP.

But this is different.

In his mind,
He has arrived.

And what’s happening around him,
Doesn’t quiet match up.

And for probably the first time ever,
He is outwardly cross.

Demanding with frustration,
And thrown with accusation,
Why do I need a wheelchair?

I can walk now.

Why can’t I just walk to class,
Out to lunch,
To the library?
Quick to mount his defence,
(Having copped onto my usual placating!);
It won’t take too long,
I won’t get tired,
I’ll just go straight up the stairs.

And I applaude,
And credit him his new self,
His confidence,
His drive,
Having played a major role in his successes.

And honestly who are we to enforce a version of him,
Onto him,
That he no longer identifies?!

Although of course,
We on the peripheral can see the time constraints,
Fatigue factor,
And safety concerns,
Validating the use of a wheelchair,
In his day to day life,
But he cannot,
Or will not,
Now he walks.

So where do we go from here?

How do we negotiate the reality of restricting his walking,
Which directly interferes with his new identity of self?

He now knows what walking is,
Means,
Feels like to do,
And he wants more,
It has become part of him.

And this is imperative to foster,
Not squash.

Everything Isaac is telling me,
Is loud with self-drive,
Choice,
Personal decision-making,
An assertiveness we’ve not before seen.

And I couldn’t be more proud.

But it’s never that straight forward.

And I’m heartbroken at having to be the one who tells him,
No I’m sorry,
You need to use your wheelchair.

But what I didn’t say,
Couldn’t say,
That keeps me up at night,
Is;

Because time cannot wait for you.

Life doesn’t allow you to go at your own pace.

Because we just don’t know how else to make this work.

Shamefully it’s as if I’ve asked,
So can you just be your former self a bit longer…?

I assure him,
We will continue to build,
Work his way up to greater distances,
Varied surfaces,
With the ease of reliability,
And safe-independence.

I watch his little face buckle,
Like I’ve taken away a favourite toy from a toddler,
And I tread very carefully,
About promises I suddenly become very aware if I say,
I must be able to keep.

Holding back my own tears,
At how unfair it is,
That it’s always him who has to adapt to the world,
And never the other way around.

And that we are taking away from him,
His right to choose.

Even though it’s justifiable,
In our eyes.

But I do hope I can help Isaac understand,
That we don’t need to see ourselves at a crossroads of an old self or new,
But rather a point where we can say goodbye to fragments of the past,
But without creating a roadblock,
That prevents us from going back,
If we choose to,
Or need to.
Being committed to taking the direction of all-directions,
Growing multidimensional;
Adding to self,
Without replacing it.

And that we may not always know where to go,
Even if it seems obvious to him,
But so long as we hold onto the momentum of change,
We make gains.

Either as the ones driving it,
Or being pulled by it.

 

And the rest of us can only hope,
To channel the confidence,
Of a nine year old boy,
Who may fall one thousand times,
But always wants to get back up,
Finding his footing to propel himself into the bright opening of whatever comes next.

Isaac,
I still have so much to learn from you.

when i grow up

I know I often note,
Just how far he’s come,
And struck by sentimentality,
I scroll through old posts,
From where it all began,
To reminisce,
To put to me once more in black and white,
The phenomenon that is Isaac.

But as I read the words,
It’s like they don’t belong to me.

And suddenly this post takes a very different path.

I weep for that mother.

And while I shake with the tell-tale-tremors of post traumatic stress.

Because she is me.

She is somehow foreign to me now.

In that power-of-time way,
That separates you from pain.

Understanding recently I had reached acceptance,
Finding a version of myself I never dreamed could be possible,
After life shook my image of rainbows,
And replaced it with blackened skies.

As I let the words of years of my life,
Wash over me,
As tears roll from me,
I’m woken again to her no longer being the only me,
Or all of me.

She is the foundations,
Of the me I am today.

Holding me up,
With the strength of structural integrity.

Life is still a mixed bag,
Of rough days,
Of heartache,
And stresses,
But my underpinning keeping me stable.

She is me.

And she always will be.

And for that I am eternally grateful.

A life goal realised;
Believe in yourself,
Own your story,
Be the best version of yourself.

I got there the hard way,
But arrived nevertheless.

And I can reflect on the life I’ve led from the day I became a mother,
Laden with special-needs,
But also blessed with the array of neuro-typicals,
In the shape of two subsequent daughters,
And the bonded bustle of sibling life.

But without doubt the disability element,
Has pulled my focus,
Almost all-consuming-obsessively so,
Which isn’t an uncommon theme,
Without doubt for families like ours,
But on the cusp of nine years of that fateful day,
That changed the trajectory of my life dramatically,
There he stands,
A strong willed,
Humour riddled,
Glowing kind hearted,
Star reaching,
Walking,
Talking,
Self feeding,
Story writing,
Climate activist,
Infectiously smiley,
Bright curious eyed,
Spark of a boy.

And I know,
I can be what he needs me to be,
Continuing to walk this path with him to find his more,
And more,
And more.

But can I also walk a path that is my own?

By diving back into my written words,
On a rainy day,
Where I feel pride for the distance I’ve cried and crawled,
Fought and found,
I am also compelled to ponder,
How much longer do I have,
To ride on the coat tails of my unpaid-stay-at-home-special-needs-mum status?

Is it nines years?
Or maybe ten?

Or have I missed my chance?

Or can I still be more?

Separate from the special-needs-mum,
From the therapist,
The advocate,
The educator,
The inclusion campaigner,
The equipment specialist,
Or the support coordinator –
The many hats I already have to wear.

And if it is possible,
Where do I go to from here?

What opportunities lay within this framework,
That allows me to wear yet another hat?

A hat I can call mine.

And a question,
Seemingly lost to me in the haze of my mum-story,
Pops into my head,
Almost tantalizing me with possibility of newness,
Yet stirring me with fear from doubt;

What do I want to be when I grow up?

home

With my boys home,
The quiet but persistent buzz,
Of life out of sync,
Is replaced with a happy normality,
Glorious in its mundanity,
As we slip back into our daily routines.

Another school year begins,
One less daughter home five days a week,
And one boy walking his way into Third Grade,
Head held higher,
Post another intensive,
Arms dangling longer with less pull back at the elbows,
As focus on shoulder blade mobility,
Neck length,
And soft jaw,
Integrates into his system.
Balance in barefoot noteworthy,
As the reduced tension in the upper body,
Allow him the subtle imperative weight-shift,
And counter-balance,
Challenged more so without splints.
And a smile across his face as infectious as ever,
With new jokes tested,
Facts acquired from his travels shared,
Latest instalments in the epic saga of his current story writing,
Physically shaking him with excitement to read to all.
Bursting at the edges of his curiosity,
Desperate to impart new found wonders of the world,
And beyond.

Everything,
Continues to feel,
Blessed.

But then there is always something to burst our bubble.

You would think I’d have learnt my lesson by now.

But a hidden part of me,
After all this time still clinging onto a scrap of hope,
That maybe this time will be different,
Maybe this time they will finally see what we’ve been trying to show them for years.

I mean this time he’s walking independently after all.

And yet here we stand,
In the clinical corridors of the hospital outpatient cerebral palsy clinic,
Over three hour drive in the pouring rain from home,
And my hope is met with the all too familiar mistrust,
Authoritarian words dripping with disdain,
For what they do not understand,
Or do not want to know.

And worst of all,
No words of congratulations to Isaac,
For accomplishing something that was never ever guaranteed.
No comments of encouragement for his monumental leap in function,
Just a painted indifference seemingly immoveable to his clear pride and joy.

And I begin to quietly simmer with the same infuriation,
That I let boil dry over two years ago,
The last time we brought our false hope to these halls,
When at that point we decided this system could not offer him anything of value,
And would not be receptive to what we were attempting to share,
For the benefit of those who may follow.

They don’t see what I see,
And they never will.

Of SPML,
And the methods of Dr Nuzzo,
It’s we do do that here but better,
And there’s no evidence for long term benefits,
Oh and his knees are 2 degrees shy of straight,
And his feet twist in at rest,
Despite conceding there’s no spasticity,
As it’s all correctable. 

Of Feldenkrais Therapy,
There’s no proof it works.

And yet here he stands,
Isaac aged eight years, eleven months,
Diagnosis of Spastic Quadriplegic Cerebral Palsy,
Walking independently,
Without any spasticity.

Coincidence?

But all kids are different,
They say.
Admitting nothing,
Although their curiosity will extend to a Gait Lab analysis review.

It’s the power shuffle,
That I’m suddenly back dancing,
Me pushing back with the whys,
If you do SPML here,
Why has it never been mentioned?
Why is Botox all you ever offer, again and again without benefit?
Why are you doing major structural surgeries,
When these minimally invasive options are available?

But my heart’s just no longer in it.

At responses of,
It’s all just soft tissue manipulation.
So there’s no real difference if it’s connective tissue or muscle.
It’s only incisions of two inches long not five nowadays.
Most kids need the extensive procedures because their spasticity is so profound.
I’m awash with resignation.

While Isaac is exceptional,
He is not the exception to the rules.

But I no longer have it in me,
To fight the good fight.

I just want to go home.

And so we do.

Leaving them unmoved,
And of exactly the same frame of mind,
Before seeing the boy learning from The Feldenkrais Method his whole life,
Who walked independently for the first time ever at aged eight years eight months,
Just two months after a minor procedure to clear out his built up myofacia,
Who never scored higher than a IV on the GMFCS prior.

Take it as you will.

Some things,
Just ain’t ever gunna change.

But this guy,
Sure ain’t one of them!

 

 

 

 

 

i am not used to walking in the shadows

No sobbing goodbyes,
No protesting against the trip,
How vastly different it is from last time.

Watching my boys,
All smiles,
Embark on their duo journey,
Despite myself,
Fills me with happiness.

And a gratefulness,
For their special bond,
Isaac’s resilience,
And acceptance of how life might be for a while now,
Jet-setting between home and California,
To continue supplementing his learning,
To keep adding to his more.

Not so much as a photo from lessons,
Sent my way,
No discussions of techniques used,
Areas of focus,
New skills discovered,
Uncovered,
Explored,
Despite a daily FaceTime.

My burning need for information,
Scolding my impatience.

And yet I know I’m learning my own important lessons,
In letting go,
In allowing it to happen,
Without me,
Trusting,
Despite my absence,
That Isaac’s journey continues down the right path.

But I am not used to walking in the shadows.

So it takes all my willpower not to badger his practitioner,
To pester my husband for videos,
Hassle for a lesson by lesson breakdown.

Alas,
I must wait,
And on their return,
I can indulge in every little titbit I can extract from either of them,
And scroll my way through the archive,
I’m hopeful his dad has been creating.

And more excitingly,
See for myself what changes there might be,
In Isaac’s movement.

And above all else,
Smother my dear boy in my love,
For missing him is intense,
The sweetness of him,
Has a giant space in my world,
Which I’m desperate for him to come back home to refill.

But for a few more days yet,
His cute little beanied head,
His smiley eyes,
His cheeky laughs,
Through the phone will have to do.

And be extra grateful,
For the little author in him,
Who’s written the best multiple-part epic adventure story,
For me to read along with,
(While being mind blown by his cleverness, imagination and creativity! This kid will probably be a published author by age 12!)
As it unfolds across the globe.

I miss you bub!
Please come home soon!

But actually just keep smashing it!
Mummy’s so proud of you.

 

welcome to 2020

As the new year opens,
I sit and simply marvel,
At what 2019 delivered.

Flicking in amazement,
Through the photos and footage,
From the therapy intensive with Sylvia,
Only two month ago,
Which marked the entering of a whole new developmental milestone for Isaac.

Where he found organisation.

The era of independent walking.

Even writing those words,
Sends a shiver down my spine.

To cast my eyes back across the images,
In full colour,
Which depict a lifetime of skill building,
Compressed into an intensive exploration through movement,
Through The Method,
To reach the pinnacle of independent walking,
Is the sweetest of gifts,
My eyes could ever feast.

As I scroll through video after video,
I am right back in each moment,
As I link long learn strategies,
With current repertoires of movement,
And I think ah ha!
Now I see!
I truly see how we got from a sixteen week old infant,
Helpless in space,
Unaware of himself,
Through the toddler years,
Of recreating for him,
With him,
That which he could not explore himself.
Into a small boy,
Entering into a world that did not fit the shape of his ability,
And therefore had to be modified,
Negotiating a relationship that didn’t look the same as it did for others,
That rarely came naturally,
And definitely not easily.
All the way to his almost nine year old self,
Who displays confidence,
Embraces his personal experience to the world as he knows it,
And smashing through milestone after milestone,
Not just physically,
But emotionally,
Academically,
Even socially despite ongoing speech impairment.

Surprising all around him with his wit,
His humour,
His compassion,
His intellect,
His interest in concepts seemingly beyond his years,
His passion for climate action,
And ridding the world of plastic,
Or his love of non-fiction books,
A genuine fascination for all the workings of this wonderous world.

The person as a whole that Isaac has become,
Stops me in my tracks,
On the regular,
Giving me head-turning moments again and again,
Astounded by his take on the world,
The joke he’s made up,
The point of view so far fetched,
I’m belly laughing.

He’s just such a cool kid.

And while I’m bias as his mother,
I do hear this sentiment reiterated by others,
Genuinely.

And while I repeatedly give testament of The Method,
And how it always did reach far beyond simply improving physicality,
Now standing,
Walking,
Talking,
Thinking,
Interpreting,
Deciphering,
Imagining,
Creating,
In front of me,
Is the living proof,
Of just how wide the net did cast.

And all the while,
Isaac has been living,
The Method always at the forefront of his journey,
But not simply his journey.

But rather being the gate in which the doors to living,
Were opened.

And the rest,
The essence of Isaac.

Which we were waiting to see in the bright rays of sunshine,
Once we helped him wade out of the dark fog,
Of brain injury.

And here we stand,
Making it through from 2011,
To today,
So grateful,
So humbled,
So willing,
To keep taking physical and cognitive steps,
Rolls,
Somersaults,
Pirouettes,
Nose dives,
Leaps,
Twists,
Tumbles,
Or whatever,
Into this new year,
In the direction,
Of opening to more,
As we’ve always maintained,
Bruises and all.

 

First strides will take Isaac,
And his dad this time,
Back to California,
To dive straight back into another intensive,
Like icing on the sweet cake of organisation.

And to think,
In those past two month,
He’s taken to walking with purpose,
Both in and out of the house,
And most recently even first tentative barefoot steps.

And while there is struggle,
And there always will be,
Despite my current bravado,
In greater measure,
There is amazement,
Wonder,
And gratitude.

And did I mention envy?
Because I probably should,
As I’m not quite sure how I’ll cope,
Missing out on two whole weeks of lessons!

Being sidelined for this particular adventure,
Has me glowing a bright shade of green.

But I know Isaac is in the best of hands with his dad,
And I’ll just have to suck it up,
And videocall a lot!

Welcome to 2020!

We mean business!