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.

open up the conversation to better function

As I force myself to climb out of the hole of disappointment,
I had fallen into,
After Isaac’s surgery,
I do have the chance to open my eyes once more to all that is wonderful,
In his movement,
In his development,
And undoubtedly in his attitude.

One reason behind his impressive ability,
To limit any sense of defeat,
We speculate,
Is down to his fantastic spatial awareness.

Isaac can influence his world,
In such a way,
He can control a lot of his frustration.

Not all of it,
Of course,
But to a large degree he can,
By understanding where he is in space in relation to that around him,
Understanding how to move or orient himself to his ability,
And advantage.

And this has been developed,
Through his therapy,
Through his curiosity being spiked continuously,
And being given the options and the chance,
To explore.

We have taught him how to move.

But he has worked out for himself,
How to make what he’s got available,
Work for him,
Without trepidation.

As I now see though,
Perhaps more than ever,
His (our/mine) trajectory isn’t straight.

And never will be.

We battle against interruptions to his nervous system,
As we’ve recently seen,
But also,
And as a constant,
We battle against time.

Against his growth to skill acquisition.

Looking over footage from when Isaac was two,
In standing there was no leg sag,
His trunk was tall,
His legs stood strong and straight,
But he was much smaller,
He hadn’t had a growth spurt in height,
That saw his bones overtake his muscles,
And there wasn’t so much activation of the fear mechanisms,
Because he was so much closer to the ground,
And more simply,
Like other two year old’s,
Fearlessness seemed to be inherent.

And so naturally,
It is easy to become overwhelmed by a sense of doom,
The feeling of the battles never ending,
Being simply too great to contemplate,
And yet our practitioner eases the woes,
By reminding me of all the things we can still very successfully fill-in for Isaac,
And work on with great promise,
As we help him put his puzzle pieces together.

And she further points out,
While Isaac stood tall at two,
He had no sideways movement,
He was missing many more elements than that which he has acquired since,
And his growth is inevitable,
Necessary,
Desired of course,
And while physically we face the vicious cycle of awkward limbs,
And muscles not keeping up,
His cognitive development as he ages,
Is what will improve all other factors,
Because he can become more aware,
He can begin to modulate his responses in movement,
With an understanding,
Of what it is we are asking him to do.

And we can get the feedback from him,
As to how something feels,
What was easier,
Why something felt so hard,
And open up the conversation to better function.

With him,
For him.

issy-raj-nov-2015.jpg

And for right now,
Be grateful for his attitude,
His sense of where he is in space,
His connection to others and the environment around him,
The strength he already owns,
And go forth knowing,
That those pathways to more,
No matter how many twists and turns,
Are getting stronger every day.

 

stable in movement/freedom to move

I didn’t know at the time,
But it would be months before we realise,
Just how much his speech is setback from his surgery,
Yet my only tactic in the present is to channel my despair into productivity,
And so I go into therapy all guns blazing,
Wanting goals,
New strategies,
Fundamentally a plan of attack.

Because nothing is ever as straight forward as we’d like to believe,
I am conscious of the fact that the assault to Isaac’s system is so wide spread,
Beyond just the disruption to his voice,
That his recovery cannot simply be only about speech therapy.

We must once again bring it all back together,
All areas,
To formulate our plan.

We must look forward,
Never back.

The single most profound goal that encompasses all,
Almost blindingly obvious,
But took me to this point to highlight it undoubtedly,
Which crosses over all disciplines in therapy,
All aspects of Isaac’s life,
Which I write down,
Almost buzzing with a high,
And a new sense of fiery direction is,
Stable in movement…. Freedom to move.

The surgery took any sense of stability away from Isaac,
It shackled him with fear,
And a new sensation of self was left in it’s wake,
Which wasn’t familiar to him,
Taking away his freedom as he knew it,
And virtually freezing him in uncertainty.

So we see,
Beyond the increased dribbling due to excessive efforting,
And the dropped open jaw from intense concentration,
As well as the lag of the tongue trying to find it’s way around a foreign mouth,
We see the W-sitting dominate again,
Lost is his freedom to side-sit,
To comfortably be slightly off his centre of balance,
We see the overriding left eye his seemingly only available point of vision,
Turning his head dramatically to view anything in sight,
We see and feel the tensity of his locked neck and shoulders,
As his right arm finds its default pulled-back position,
All in a bid to help himself feel stable,
In the only ways he knows how,
When his body feels like its in crisis.

And while I feel helpless,
Our team have the expertise and direction Isaac needs,
And the tonic to help me see the way forward.

We must reintroduce many elements touched on regularly,
And new techniques which might just help settle his system,
Predominantly we must reduce all threat.

We help him hug himself while on his back,
Arms crossing the midline in a giant bear-hug,
We show him how to narrow his legs when on his knees,
To tuck the feet under his bottom reducing the pronounced internal hip/thigh rotation,
We roll him this way,
And that,
In a nice way to help him revisit the diagonals,
And freedom in his pelvis.

IMG_9108

Eye patching is reintroduced to help break the bias,
And ease the squeeze through his neck and shoulders,
We must help him release his right arm,
If for no other function than the give him a chance to rest at this point,
Allow him to lean onto it to help him feel stable enough to lift and operate his left,
We need to give him confidence once more on his bottom,
By showing him how to use his upper body to move between flexion and extension,
By curling his core and straightening it to become tall,
To help him see he doesn’t need to be afraid,
If he knows where his head is in space,
Can confidently correct his position to restabilise.

IMG_9109

We do lots of work on his tummy,
And right hip,
To seek the freedom and fluidity he needs to bend his right leg,
Which is unfamiliar to his system,
And we roll him across the therapy table gently,
To loosen the tension,
A show him the feeling of his body being in multiple positions,
And moving through it with ease,
No pain,
No strain.
By being on his tummy or back we eliminate his fear to move.

IMG_9110

We lengthen his neck in the safety of child’s pose,
Curling him peacefully,
And moving him through to sitting by anchoring his pelvis,
And keeping the head tucked,
To fight off the power of spasm that throwing his head and shoulders back invokes.

IMG_9111

And by the end of one session our practitioner is able to get him into standing,
Without fear,
With flat bare feet,
And a reduction in tone we hadn’t seen since before surgery.

We focus again on roller work,
And the control required in order to put his hands out in front to catch himself,
We explore forward and side bending orientations,
Finding the expansion in the shoulders and trunk,
Lost in his protective mechanisms after the operation,
Seeing a fantastic extending of his legs,
Which is very absent when in standing.

Because he feels safe enough to release the body,
So tight with fear of repercussions,
It hadn’t let go since pre-op.

IMG_9113

Speech sessions now occur in lying down,
To continue the reduction of fear and effort,
To help Isaac be relaxed in his whole body,
In order to rebuild on lost function.
His words are no longer the focus,
But the simplicity of individual sounds,
“MM” “T” “FFF” And “Shh”,
For without the sounds the words will never come,
The idea of bringing his lips together again,
His tongue moving separately from the jaw,
All imperative if we are to regain the conversation,
And these currently cannot occur if there is tension and effort.

So the patience must once more come in spades,
If we are to help Isaac stabilise and find his freedom to the degree he had before surgery,
And beyond.

The effort must be replaced with ease.

The fear must be replaced with confidence.

And we all must breathe through this process collectively,
If we are to make it through.

The End of Chapter Sixteen.

very very sorry

As the days go by,
And the bubbly saliva fills his mouth again,
And the tongue seems incapable of movement,
My fury builds further at the surgery,
That has claimed so much,
Yet given nothing in return.

It feels like now,
We must start from scratch.

Lost is any sense of timing with his tongue for speech,
The clear crisp sounds of “t” and “d” have faded into a lazy “n-ya”,
Blurring the words more than usual,
Expelling increasingly more frothy dribble,
Which seems to be adding more than ever to poor pronunciation,
Along with the profound lag in defined movement of the tongue and jaw.

The beginnings of Isaac separating his tongue from his jaw,
And lips,
Now has regressed back into a single entity,
Using the entire mouth structure as one apparatus,
As if the surgery has fused it all together,
Erasing his memory of learned words,
And what it was the mouth did to produce them.

And the thought of all those hours,
Days,
Weeks,
Months of work washed away in one foul swoop,
Is sickening,
Leaving me utterly defeated,
Petrified of the re-climb.

And like usual so much of that fear comes out as anger.

The surgeon feigns ignorance,
Or at best indifference to the results,
Simply claiming he’s never seen anything like this happen before,
And come back in three months for another check-up,
(but you’ll need to pay for that consultation as it’s not covered in post-op review),
Dismissing the severity of the outcome,
Completely unfazed by my distress,
And claiming zero accountability.

When I am required to prompt him to physically examine Isaac’s throat,
Tongue and mouth,
To see if structurally he had wounded him,
Feeling this would have been standard review practice,
He was almost thrown aback,
And I simply fall into more doubt and regret,
For the complacency alone towards a small child’s only post operative review,
Where he wasn’t even planning to look into his mouth,
Screams loud and clear,
That we will not find our answers here,
That the rate in which they work through these procedures,
Alone speaks to their trigger-happy attitude,
A focus on quantity not quality.

But I press one,
Querying as to how many cerebral palsy children he has performed this op on,
And his honest answer is very few,
And the ones from memory didn’t talk prior to surgery,
So had little to compare mouth function to.

And it turns out,
There isn’t any specialist out there,
Or that he is willing to disclose,
Who does specialise in these operations for kids like Isaac,
Who may have more insight into what’s going on.

A question granted I should have asked prior to surgery,
And yet one that never crossed my mind,
Deferring to the expert to guide me,
The reassurance of its routine nature,
Comfort in itself,
And no mention of side-effects of this kind.

Plus once more,
The lure of the cure was far too great.

And I never thought it would lead us here.

So another day wasted for a ten minute consultation,
Leaving me with less than what I arrived with,
Has me drag my sorry self,
And Isaac back into the elevator,
To face the two hour drive home,
Sinking in my defeat,
Burning with a violent sense of anger,
And consumed by guilt.

For the rebuilding and the hard work now falls back on my shoulders,
On Isaac’s entire system,
And we’ll cause the specialist not another moments thought.

post op novemeber

There are tears,
All the way home,
And all I can do is tell Isaac,
I am so very very sorry.

And hope that he will forgive me.

three levels of movement

As we face this current phase of particularly evident disablement,
From the profound shift in Isaac’s ability post adenoid-tonsillectomy,
I begin to really question what is happening for him,
In a system I felt so confident in,
In a skill-set on a slow but constant incline,
Because it is hard not to feel the whip of helplessness,
Hit fast and sharp across my being.

For me personally in times of desperation,
I’m driven towards knowledge,
In a craving to categorically compartmentalise,
In hope of gaining control.

I become frantic with my note book and pen,
Madly believing the more I understand,
The better Isaac’s outcome will be,
And the more at peace I can feel,
Sitting within the murky waters of impediment.

There is a lot to be said for the saying knowledge is power.

And I want to know what Isaac is missing,
Where he needs to be going,
And quite simply how movements work,
Progress,
In order for him to get there.

And I am grateful for the wealth of knowledge our practitioner holds,
And so readily shares with me in layman’s terms.

So she begins by breaking down the three levels of movement,
In order of complexity or maturity:

Homologous – symmetrical movement,
Where both arms legs move together,
Without any concept of weight shift,
As in a two handed pull (working together) in a primitive action.

Homolateral – involves asymmetrical movement,
Where the hand and leg on the same side work together,
At the same time.
Often seen when children begin to walk,
Raising the leg and arm on one side in a exaggerated lean motion in order to step,
Followed by the other side doing the same for the subsequent step.
By way of shifting all of ones weight to one side at a time.
More advanced than Homologous yet with it’s own limitations.

Contralateral – Opposition movement,
Where diagonal movement becomes possible,
As an arm on one side and the opposite sides leg work together,
Allowing for a much more sophisticated movement,
Greater ability to weight-shift,
And advanced control of movement.

But fundamentally,
We need all three levels of movement,
For everything we do.

The overall impact of not having access to these movements,
Is having so much less available.

And I can immediately see how this is so apparent in Isaac.

While homologous and homolateral movements are more available,
In the act of knee walking,
Or using his walker with arm gutters,
Where diagonals are not utilised,
Or pulling himself to stand by way of both arms,
Where very little weight-shift or even weight-bearing occurs.
It is reassuring to recognise that,
The sophistication of contralateral movement while no way near age level,
Is present in his crawling,
Despite the diagonals not as yet translating into many other actions clearly.

And by knowing this,
I do feel more at ease,
And see more clearly through educated eyes,
That despite setbacks,
Isaac continues to progress through vital stages of movement,
And it now becomes our job to help those movements translate,
Into a great plethora of actions.

So one of the many things we begin working on,
To help re-establish his contralateral movement concepts,
Is having Isaac lying on his back and pushing backwards along the therapy table,
With one flat foot at a time,
Alternating.

IMG_9020

By way of lying down,
As always it limits the all too familiar excess-demand,
Ever present,
And more apparent post -op,
That being in standing provokes,
And by making the challenge too great,
We know hinders the space to learn.

And so this must be our latest approach,
As it has been,
Even if somewhat hazy to me,
To minimise effort,
By way of teaching him the essential components of movement,
In task in sitting,
Or lying down,
So they’re accessible,
And then once familiar,
And a confident part of his repertoire,
Will begin to translate in more demanding situations,
Like getting to standing and walking.

But we cannot rush.

And we cannot miss any of the elements.

a whole lot more patience

It’s almost three weeks post op,
Before we finally make it back to therapy,
And while I continue to wallow in the magnitude of Isaac’s lost function,
Our practitioner is not at all surprised.

Because any insult to our system causes any of us setbacks,
Yet as we’ve seen again and again,
For Isaac’s fragile system,
Already so compromised,
It’s grossly magnified,
And his protective mechanisms come out in full force,
To do just that – protect him.

So his system is responding accordingly,
To such an onslaught,
As we see a shortening,
Slumping action,
Almost foetal-like,
As if to make himself small in a defensive technique.

Understanding this,
Does help,
Yet it doesn’t necessarily make the reaction any easier to stomach,
As the upward climb in and of itself is hard enough,
Without the repeated stumblings backward,
Requiring an entire system reboot,
And a whole lot more patience.

With his lethargy,
The sessions take the opportunistic approach they always do,
And now is the prime time to explore Isaac’s ability to close his mouth,
And breathe through his nose.

While closing his lips has always been a challenge,
We now see just how much re-learning is involved,
And with the added fear response from such recent pain,
It takes a lot of coaxing.
And until the seal is tight enough,
The inhalation will merely continue to enter through the mouth,
Instead of his nose,
Without him understanding the difference.

We now see loud and clear for the first time,
Just how completely foreign this action of breathing through the nose is to Isaac,
For he’s quite simply never needed it,
Having always had an open mouth to breathe.

And just like so much for Isaac,
This does not come instinctively,
Due to his brain injury.

We begin by exploring the outward blow of air from the nostrils,
Which because felt on the hand if held under the nose,
Can more easily trigger the cause-and-effect process,
And promote learning,
And Isaac can get this in short,
Strong gusts,
But without an active inward breath,
Which he cannot consciously do,
There isn’t much air to expel,
Explaining why it’s only sharp quick effort-filled attempts.

It is our starting block,
To a very complex task for Isaac.

The concept-seed needs first be planted,
In order for it to grow,
And then be given time,
Love and attention for it to establish itself.

And there is so much about breath that is vital in connecting our whole system,
Which we really need to explore in great detail with Isaac,
However at not even five years old,
It is far beyond his cognitive capabilities,
And will need to be broached at that level when he is older.

But still we must help him rediscover his mouth,
Especially his tongue,
His lips,
And his neck and jaw,
If we are to begin to rebuild.

We need to do any task in lying down,
Or leaning right forward onto a table,
In order to relieve him from effort,
Because we know that if something is just too demanding,
It’s counter-productive.

And with a system so depleted,
It doesn’t take much to exert him completely.

IMG_9007

It’s too early to say whether there has been any positive outcomes,
From the surgery,
With speech still nothing more than an inaudible croak,
Nose still partially blocked with healing,
And the dribble while somewhat absent,
Is most likely due to dehydration,
As fluid intake is still minimal.

So all I can do,
Again,
Is surrender myself to the process of Feldenkrais,
And try my best to retain all the tools I require,
In order to help with Isaac’s restoration,
And cling to optimism,
That once complete,
His foundations are even stronger than before.

lost in the emaciation

As the days post surgery slug by at an excruciating crawl,
Isaac becomes more a shadow of his former self with each passing day.

He refuses to eat from pain,
He is took weak to roll,
Or crawl,
Or move independently at all.

He is a wash of grey,
What little muscle he had has withered,
His fine covering of chubby flesh reduced to skin and bone.

I am shocked and broken by the response,
For someone slowly climbing the ladder to self sufficiency,
This set back is monumental.

And to see the cheery sunlight be sucked from his bright face,
And be replaced by angst,
Pain,
And severe discomfort,
Makes it all so much harder to witness.

He barely makes a sound apart from cries of agony,
His beginners babble and chit chat lost in the emaciation.

We do all we can to syringe chicken broth into his mouth,
Sips of water and hydralite,
But it’s grueling,
And while we know the lack of sustenance is contributing to the wasting,
His refusal is as fierce,
As it is heartbreaking,
And we are helpless against it.

We have to allow him time,
Place the cool washer upon his brow,
Apply cream to his cracking lips,
And hold him close in the ergo carrier,
Like when he was a baby.

post op nov 2015

For as long as it take,
Until the pain subsides,
Appetite returns,
A smile is back across his beautiful face,
Before we can assess where he is at physically,
And emotionally,
After what has proven to be a much greater ordeal than we bargained for.

bravery award

It’s less than a month before the next big tizz has me in a whirl of panic,
Having me question what the right option is,
Racked with guilt,
And indecision.
(A state-of-being I still cannot seem to get a handle on,
Despite so many many hours, days, months and years now,
In the turbulence of Cerebral Palsy).

It becomes apparent that Isaac cannot breathe through his nose,
An action partly absent as a skill never learnt,
But predominantly according to the ENT specialist,
Is the fact his adenoids are grossly over sized,
Blocking airflow.

And does he snore?
Yes.

Does he only mouth breathe?
Yes.

Does he also tend to have a regular swelling response from his tonsils when unwell?
Yes, why?

Because they too are moderately enlarged in size.

Well that’s just wonderful.
(sarcasm).

I hate hospitals.
Well, it’s a love-hate relationship.

One failed him at birth,
While another saved his life after birth.

I can only imagine the type of relationship Isaac has with them,
So emotive in their smell,
Their fluoro glow,
Their constant hums and beeps.

So the thought of taking him back to hospital,
For elective surgery,
Is almost unfathomable,
Bringing back too many memories,
Dragging with it too many bucket-fills of anxiety,
And igniting an ever present underlying fear of things going very very wrong.

And yet,
I’m told he cannot breathe properly,
The size of his tonsils could also be impeding his speech,
By way of blocking the passageway for saliva trying to make its way down the throat.

A single surgery to just remove the adenoids alone,
Is our first option,
As tonsillectomy’s are renown for their brutal recovery,
For while they are enlarged,
They are not dramatically excessive,
So there’s potential for them to remain without causing harm.

And yet the possibility of reduced saliva for improved speech,
Seems too tempting.

Have I been making his life even harder by not noticing this earlier?
Or am I once again too hopeful for a quick fix to solve all his problems,
Wrapped up in one neat little surgery?
Desperation clouding my rational mind?

I honestly don’t have the answer,
But can confidently say,
I am desperate.

I have been desperate since the moment he was born.

And I may remain desperate for the rest of his life.

And so we opt for the double adenoid-tonsillectomy.

Despite myself.

My fear.

My doubt.

And so on the day of the surgery,
He is wheeled away on a hospital bed,
Draped in white,
Drowsy,
With cords,
Looking so small and vulnerable,
It’s almost unbearable.

I want to scream I’ve changed my mind!
Bring him back to me right now!

But then he’s gone,
With a sympathetic look from staff,
And the reassurance of the routine nature of the op.

Thankfully within an hour it’s done,
And his small pale sleeping face,
Is by my side again,
And we’re told it all went smoothly.

He awakens in good spirits,
Amidst his drowsiness,
Hungry for the promised jelly and ice cream.

It soon becomes clear however,
That eating is painful,
His stomach is upset from the anesthetic,
And the look on his face is heartbreaking.

I’m as helpless as I was the day you were born.

And little did I know then,
That the two weeks to follow would only get worse,
So very much worse.

But I hate myself already,
For putting him through it,
Spilling over with guilt for more pain I have allowed him to go through.

But all I can do for now,
Is sit in my own guilt,
Squeeze his little hand,
Tell him mummy is here,
And stroke his forehead until sleep comes over him once more.

tonsillectomy 5 nov 2015

A life,
So far filled with too many bravery awards,
For his short four and a half years.

Although without doubt deserving of every single one.