quizzical calm

“Why don’t you dribble, Mum?”
He says to me looking up through his Bambi lashes,
As I’m tucking him into bed for the night.

And while my heart sank all the way to my toes,
There was no hint of sorrow in his voice,
Just posing a question like any other.

And I attempt to deliver my response,
Matching his quizzical calm.

So I say, “It’s because my brain is more aware of my mouth,
My lips,
My jaw,
My tongue,
My throat,
So much so that it sends messages for me to close my lips,
To swallow regularly,
Which clears out my mouth of any excess saliva,
So it doesn’t fall out,
And those messages are so good at travelling from my brain to my mouth,
That I don’t even have to think about doing it,
It is basically automatic”.

He is quiet for a long while as he digests this information,
To the point where I think he’s going to change the topic,
Or whisper his last “good nights”,
But instead he looks me in the eye,
Brings his finger to the top of his head,
And traces a line down the side of his face to his mouth,
While saying,
“So mines like, bumpy, bumpy, bumpy?”

Alluding to a message that travels from his brain to his mouth.

And I was so stunned by his simplistic, yet virtually accurate, take on it,
That I laugh-cried.

We went on to have a chat about awareness,
And how everything he was doing with his Feldenkrais practitioner,
Was mapping out more of himself for his brain,
Locating the parts the brain wasn’t so aware of,
Particularly his mouth,
In hope that with time,
The messages wouldn’t be so “bumpy”,
But smooth and direct.

And by keeping up all the great work now,
Might mean that one day he too wouldn’t have to think about it,
And as diligently implement the tricks we have in place like the Apple Watch alarms vibrating a reminder to wipe his chin with a sweat band,
As he currently does.

And I couldn’t stress enough,
How he was doing an incredible job,
And how beyond proud we are of him,
Always,
No matter what,
As I tucked the doona tightly around him,
And wished him sweet dreams.

And what I realised in that moment,
As I closed his bedroom door,
Still slightly light-headed,
Grasping the gravity of his amazingness,
Was the reality of while we strive for the awareness to implement habitual change,
With awareness,
Can come the negative connotations,
And the desperation to fix.

Which honestly I have felt over the years,
And definitely more fiercely in relation to his dribbling and compromised speech,
Than other functions,
Yearning to fix it,
But to the bottom of my heart,
Wish to protect Isaac from feeling any notion of,
For as long as possible,
Or rather always,
And forever.

But I also know that’s unlikely,
That this is merely one of the first,
Of many, many more questions to come.

But what this has also shown me,
Is that I can have absolute faith in Isaac,
And his strength in processing the answers to any,
And all,
Of his questions,
However big,
Daunting,
And self-identifyingly raw.

And if history is anything to go by,
He’ll be stronger,
Wiser,
And braver,
Than me,
At every turn.

And if he’s not,
Then,
Like always,
We’ll figure it out as a team.

And keep loving him more and more and more.

_{The End of Chapter Thirty-One}

Fall and fall

I have mentioned in the past,
How vital it was for Isaac to learn how to fall.

To not be afraid of falling.

To fall and protect yourself.

And to do this,
To make this possible,
It has been a journey of integrating responses,
Until they become new habitual patterns,
Requiring no conscious thought,
But a mere reaction to the event.

And over ten years he has been learning this,
From many orientations of sitting,
Kneeling,
But never has it been both a greater challenge,
And more vital,
Than since learning to walk independently.

And over the last eighteen months,
Since walking for the very first time,
He has fallen,
Again and again,
And again.

And it can be terrifying.

But the more he’d fall and fall,
The quicker his habitual patterns began to fire,
And the less likely it became that he’d hurt himself.

There have been injuries,
No doubt,
But as he integrated his ability to tuck his head,
Reach his arms out in front of him,
Bend at the knees to squat,
The falls became more and more,
Him falling on his bottom,
The ideal landing.

And because he has this skillset reliably available to him,
As habitual patterns,
He doesn’t need to fear falling.

And he can then find a surface to pick himself up,
And keep going.

The fear response,
Can be debilitating,
Necessary in many situations,
Unquestionably,
But to be an independent walking being,
Aiming to go about your day,
You must feel safe,
Confident,
And relaxed,
That you can judge the environment around you,
React accordingly to changes,
And ultimately prevent a fall through the use of your dynamic self,
However if the fall comes,
To land in the safest way possible.

And honestly,
I have never been more proud,
Watching Isaac’s resilience,
His nonchalance around falling,
To protect himself so well,
And his willingness to keep on going.

And subsequently seeing less and less falls,
As he integrates many more responses,
To help stabilise himself.

And the best part of all,
Now that he doesn’t fear falling,
Now that he knows how best to fall,
He now has the option,
Of choosing to fall,
When he wants to.

Just like at the end of his first independent walking,
School Cross Country,
For dramatic effect!

Because this kid sure does have the best sense of humour.

self-image

“The behavior of human beings is firmly based on the self-image they have made for themselves. Accordingly, if one wishes to change one’s behavior, it will be necessary to change this image.

What is a self-image? I would argue that it is a body image; namely, it is the shape and relationship of the bodily parts, which means the spatial and temporal relationships, as well as the kinesthetic feelings. Included with this are feelings and emotions and one’s thoughts. All of these form an integrated whole.

How does a self-image come about? Everyone feels that his way of walking, speaking, and behaving is uniquely his own and unchangeable. He totally identifies with this behavior, as if he were born with it. The way he sees objects in space, the way he tracks movements, the way he inclines his head, and the way he looks at things seem to be innate; and he believes it impossible to change any of these things — other than perhaps their rate of speed, or intensity, or duration.

Despite this belief, everything central to human behavior is acquired only by a long period of learning: to walk, to speak, to see a photo or painting in three dimensions. One’s very movements, attitude, and language are acquired purely according to the accidental circumstances of one’s place of birth and environment.”

-Moshe Feldenkrais

^{Bodily Expressions.  By Moshe Feldenkrais.}

^{Somatics, Vol. 6, No. 4. Spring/Summer, 1988. pp. 52-59.}

^{Somatics, Vol. 7, No. 1. Autumn/Winter, 1988/89. pp. 50-53.}

we want fun

If it’s fun,
Bringing us joy,
Feelings of achievement and success,
Then we what more of it.

This is my own personal experience.

After ten years as a stay-at-home mum,
A special needs mum,
A mum driven to be the best she can be,
Always putting her children’s needs first,
A life bursting with constant demand,
It didn’t leave much room for fun.

So to now be back playing the sport I love,
That genuinely brings me so much joy,
Laughter,
And social interaction,
Playing an instrument that fills up my creative void,
That for longer than I can remember had always had an outlet;

I feel rejuvenated.

I feel appreciative.

I feel purposeful.

I feel happy.

My body is moving,
My brain is engaging,
And I’m more myself than ever.

Now this is pretty crucial,
When I think about Isaac’s development.

While I don’t have a brain injury,
The same driving factors are at play.

Our brains both recognise pleasure,
The sense of joy and achievement,
The waves of satisfaction,
And recall upon it like a drug.

And while I can go out and join a tennis club,
Or pick up a flute,
For Isaac it has been a finely facilitated crafting,
A process of recreating,
Reinventing,
And discovering ways to tap into that level of satisfaction,
Albeit mostly through guided movement initially,
But subsequently through more and more self directed play with every passing year,
The outcomes of pure joy at our own physical successes,
Are parallel,
And drives the craving for more,
All the while fuelling the brain with skills,
Of new pathways to movement,
To creativity,
To self.

I now see clearer than ever,
Just how much of Isaac’s Feldenkrais journey thus far,
Has been about play.

About having fun.

Never about therapy.

And yet,
His developmental growth,
Improvements,
And capabilities,
Just keep reaching further and beyond.

And I’ll never be more grateful for our Feldenkrais Practitioner,
For the past ten years of always thinking,
Of ways to bring everything into play.

Beyond the FI (Functional Integration),
Hands on guided work she does biweekly with Isaac,
She has so effectively found access to Isaac’s missing links,
Through play.

Constantly creating,
Finding,
Inventing,
Games and activities,
That seek out what’s unavailable,
Or hindering current function,
And draws it out,
In play,
Giving Isaac access to it,
And adding it to his repertoire.

And the more I see of this approach,
I credit it also to the mindset biproduct,
That he carries,
That HE CAN.

And more so that HE WANTS TO.

And through our practitioners expertise,
And all the experimentation,
She can make sure the particulars of a game or activity,
Like the weight of a bat,
The texture of a surface,
The placement of a ball,
His starting position for any given movement,
Are advantageous,
Not making things more difficult,
Before he’s even begun.

We want the thrill of the game,
Without the overload of too much challenge.

We want the success,
And drive for more,
Without reaching fatigue.

It’s a balance,
That doesn’t exclude,
Or isolate him from participation,
But rather encourages and enhances participation,
Through seeing and knowing,
His efforting-patterns,
His movement organisations,
And putting them together as best he can,
In play.

We don’t want perfect,
We want easy.

We certainly don’t want to be precious,
We want confidence.

We want invaluable variation,
We want having-a-go,
And we want fun.

It can range from big movement high energy games,
Like balloon tennis,
To quiet board-games,
And everything in between,
Extending from his Feldenkrais lessons,
To home,
And into the school curriculum,
Because everywhere is an opportunity for growth,
For inclusion,
And most importantly for fun.

And EVEN to the Roller Skating Rink.

I mean why not?!

And the excitement and joy it brought with it,
Was priceless.

(Not to mention the mind blowing skill of independently roller-skating with his walker)

Next up,
Power-wheelchair tennis,
HOORAY!

Stay tuned folks!

pausing

“Pausing creates space for something”

-Nerum Ankti

Quote from The Intention To Pause

Find the video at Movement and Creativity Library — Movement & Creativity

ten

For every moment during the first year,
I clung on for dear life,
I barely remember much more than the knot in my stomach,
The beat of my rapid heart,
The hypervigilance of my fear,
And the heavy blanket of disbelief.

But I do remember his smiles.

And the few years that followed,
I grew into being his mum,
Claiming my place amid the white coats,
My voice amid the noise,
Gaining confidence to find our way,
To travel down the unknown road that lay before us.

And all the while he smiled.

By the time he donned his third birthday crown,
I began to really see the sweet little boy behind the Bambi lashes,
His single spoken words music in the songs of conversation.
And while our journey,
That never seemed to travel straight,
Continued to rock wildly with turbulence,
The pull of so many shoulds,
Powerful and daunting,
The path was now firmly paved by The Feldenkrais Method.

And by now his smile had captured hearts around the globe.

And every subsequent year,
He kicked goal,
After goal,
As The Method gave him continually expanding access to himself,
Which gave him access to his surroundings,
Which gave him access to interaction,
Which gave him access to learning,
To life.
And gave us,
Access to the wonder that is Isaac.

Always,
With a smile from ear to ear.

And now he is ten.

Ten years of Isaac.

And the tapestry that weaves his ten years,
Wraps and twists around so much love,
Support,
And generosity.

Ten years that has given me an insight into myself,
I don’t think I ever would have found.

Ten years that while at times seeming like a lifetime,
Splashed with impossibilities,
Has arrived in the blink of an eye.

And all the heartbreak,
The impossible times,
Seem far from insignificant,
But somewhat distant,
Because of where it’s lead.

And while the hard times are still present,
And without doubt ahead of us still,
The unchartered path before us doesn’t seem so daunting,
Because Isaac is leading the way more definitively in his chosen direction.

And more and more,
I get to stand back,
And marvel at his choices,
His intentions,
His take on the world.

And the foreverness of Cerebral Palsy,
Of disability,
That almost crushed me alive,
Ten years ago,
Doesn’t seem so hard,
And quite possibly instead,
A gift,
Looking into this bright smiley face everyday.

Happy birthday my darling boy xox

how much we learn

I pause for a moment,
As I watch my daughter quite elegantly backstroke her way down the length of the lap pool,
And I’m reminded with a jolt of affection,
Astonishment and wonder,
That she’s only six years old,
That she’s only been learning for a minuscule six years so far.

And yet,
Look how much she’s learned!

The sheer magnitude of what’s been possible for her in her very short life so far,
Suddenly takes my breath away.

And certainly extends well beyond the pool.

It’s like I forgot to pay attention.

Because with a healthy brain,
I didn’t need to question her development.

I simply took for granted that she knew how to learn.

And just now,
In this moment,
A soundtrack of bustling afternoon swim lessons,
And the stench of chlorine filling every space of the enclosed aquatic centre,
I am humbled by the acknowledgement of how incredible learning is.

And how lucky we are to learn.

And fascinated further still,
By the wonders of how it takes place,
Neurotypically with seemingly little awareness,
And for those with an acquired brain injury,
Condensed with awareness.

And yet,
We can all still learn.

There is no deadline.

There is only time.

And if we choose to use our time well,
With particular consideration to movement,
We can all learn how to learn,
Or keep on learning,
And how much we learn is continuously,
Blissfully open-ended.

_{For my daughter Camilla,
I’m forever proud of you.}

variation

And to have variation,
Is to generate differences on purpose.

Interlude.

intentions for a new year

Artwork by Tiffany Sankary

where do we go from here

The Ocean Alley song lyrics,
“Where do we go, where do we go, from here”,
Always swim around my head when we appear to arrive at a junction of importance,
Particularly the end of a calendar year.

I fill with a nervous energy,
Slightly panicked,
That we didn’t quite accomplish what we set out to,
And that what’s not finished,
Feels to grow in weighty importance.

While a new year does,
Sit,
Shiny and appealing in it’s newness,
It’s blank canvas of possibilities,
I have begun to feel a shivery haunt,
Of passing over the in-progress,
Into it’s open expanse.

And the direction in which to take,
To reach the finish line,
Feels impossible to decipher.

And then,
As I blast Knees through the house,
Because I’m sick of the sound of my own rendition,
Feeling completely awash with uncertainty,
I realise,
That it’s just that,
The element of unpredictability,
The unknown,
And my own impatience.

And I’ve never done well with unpredictable.

I’m hardwired for the comfort of the familiar,
And a need to know,
Immediately.

I mean,
I have certainly lived and grown with a huge unknown,
Since the birth of Isaac,
And balanced out my responses in varying degrees of success,
During his journey within mine,
But it doesn’t seem to get any easier.

And every time something pops up,
There’s a setback,
Or an unforeseen outcome,
It feels brutally personal,
Sickeningly unfair,
Or pure ecstasy,
Depending on the situation.

And don’t for one second misunderstand me,
Isaac has smashed-it-out-of-the-park,
He’s broken-the-mould,
Outdone himself,
At every stage of his diagnostic expectations,
But on this merry-go-round,
One thing always takes,
From another,
And seemingly he can’t just have it all.

And that,
Can be very discombobulating.

It’s not ever about being disappointed with Isaac,
Not ever,
But the injustice of it for him,
Just breaks my heart.

But as I’m repeatedly told,
That’s the nature of beast that is brain injury.

And the rotating energy pool that Isaac has,
That us neurotypicals,
Don’t have to contend with,
Therefore cannot completely appreciate,
Or understand,
How real the limits are,
And just how much time it takes to replenish,
Re-set,
Re-fill the energy-tank,
And how there’s only so much that can be actioned in any one moment,
At a certain reduced speed,
And for a certain diminished length of time.

Particularly when something is new,
Or there’s a drastic change in circumstances.

And what’s both new and drastic for Isaac,
Is that he is walking,
The integration of his legs into his self image,
Has been huge over the past year,
Then furthermore,
The added variable of having ankles that move and wobble,
Without the fixed structure of an AFO,
Has vastly increased demand on his system,
And mixing all that together with the increased expectations of school,
Social interactions and life of an almost ten year old,
Suddenly the reverting to slurred incomprehensible speech,
The return to excessive drooling,
The reappearance of the relentless chicken-wing right arm jutting behind him,
And lake of progress to his upper limb function,
Makes a whole lot more sense.

Even though it still isn’t fair.

But as always,
I’m thankful,
Because despite yearning for a different outcome,
I have the privilege of seeing it from this perspective,
A gift of the Feldenkrais Method.

And while I’m still first and foremost a mum,
Prone to the ferocity of maternal claws in protection of my babies,
The need to fix things,
To put the Band-Aid on,
Making everything better,
I cannot fix this.

Isaac is not broken,
He has a nervous system that needs the gentleness of a mothers kiss to the forehead.

And the continued kindness of the Feldenkrais Method.

And I’ll just have to keep singing Ocean Alley,
Knowing,
That the Method always knows where to go from here,
And the rollover of one calendar year to another,
Is nothing more than an invisible line,
To the same place we already are.

The End of Chapter Thirty.