the chance to try

by thankfeldenkrais

There seems to be a big shift for Isaac,
As we utilise the new footwear,
Which has him inclined to self direct his play more fluidly,
From crawling on the floor,
To transitioning up to standing at his ballet bars built into the front windows,
And climbing up the foam steps in his room to propel himself down the slide in shrieks of joy.
And if for no other reason than,
The fact that now he has the freedom to do so,
Because his feet can move around to where he needs them to be,
Now out of AFO’s.

And I am excited again.

His practitioner is thrilled,
For the flow on effect of all this new freedom is profound.
He’s getting more softness through his upper body,
He’s weight bearing more effectively through his arms,
He’s turning freely through his trunk.

And as the extreme effects of Botox subside further,
His walking becomes more controlled,
Less effort invoked,
And we begin to see this as the trial of the R82 Crocdile Walker continues,
And so we seek funding to get one for Isaac,
Of his very own.

The walking,
As much as I want it to be the be all and end all,
Still is just one action,
Still gravely dependent of a plethora of other skills,
Isaac has yet to learn,
So while I feel lifted by the decision around attaining a walker for him,
I have to be realistic,
As to where our focus still must be,
In order to foster the possibilities of independent walking in the future.

Therefore the idea of alternating movement is imperative,
As this is in the act of walking,
And Isaac can do this effectively in crawling,
When climbing stairs,
But a walker by nature restricts this in the upper body,
By having the hands fixed holding the aide.

Which leads us to exploring the idea of crutches.

I am aware,
As is our practitioner,
How far fetched it is in terms of him using them independently,
However what is exciting is the potential they might have in opening up,
A nicer gait pattern,
And including the upper body in his walking practice.

What unfolded in my quest was both unexpected,
And yet brutally telling of the system,
In which we are up against in the world of CP.

In hope of loaning the crutches over purchasing,
I contacted the closest major hospital,
With a big CP rehab clinic,
To find out if they loaned the forearm crutches,
Small enough for Isaac,
Or if in fact they knew where might.

When a good week after my initial enquiry,
I hear back from the head physiotherapist,
Her immediate response is an attack,
Of who prescribed these crutches?
No three year old could use them,
That’s far are too young,
Aggressively claiming her authority,
And rudely stating her claims.

So thrown by the brute of her force,
I am momentarily speechless,
Until I gain my composure,
And simple say,
Have you met Isaac?
How could you possible know?
Who do you think you are putting constraints on what my child can and cannot learn.

Why would you make such grossly generalised statements?
And until you meet a child you shouldn’t judge based on your own preconceived notions,
Of what a three year old with Cerebral Palsy,
Can and cannot do.
A simple yes or no,
As to if you loan them,
Would suffice.

The answer,

At which point I throw down the phone and burst into tears,
For up against the system,
I am powerless,
But threaten my baby,
You will cop the wrath of my fiercely primal protective mother instincts

And while I shouldn’t have been surprised by their narrow-mindedness,
I was,
I felt let down,
That there was no –gee how wonderful, what a great idea, he must be doing so well,
That could really help him get the idea of alternating movement.
That all he is a statistic to them,
A number on a screen which reads,
Spastic Quadriplegic Cerebral Palsy,
Three years old,
Cannot use crutches.

So I ring around,
And find a supplier who stocked them,
And for sixty-two dollars,
My Spastic Quadriplegic Cerebral Palsy,
Three year old,
Would get the chance to try.