blessing in a black cloud
At more than four years into our journey,
It doesn’t get easier to navigate the muddy maze that is the disability sector,
And becomes more and more apparent as the months drizzle by,
That word of mouth,
Learning from those who have been through it before,
Is where the best things are found,
And the most wisdom sourced.
An area for contention for us,
Has always been the use of AFO’s (Ankle Foot Orthotics),
Which proved excessively restricting,
Allowing no dynamic movement within the ankle and foot,
Or any sense of the foot belonging to the body image,
Which lead us to predominantly having Isaac wear Piedro Boots.
Until a friend,
And fellow mother on a similar path,
Mentioned a new Bio-Flex footwear she had just had made for her daughter,
Which while similar in structure to the standard of AFO we had become familiar with,
Was manufactured from a soft,
That would provide the stability Isaac would require,
Yet with an element of receptive feedback,
Through the material with give,
And the ability to wrap the foot,
Rather than lock it.
And I was intrigued.
As well as frustrated,
That I hadn’t heard of it before,
From someone within the system,
Our current provider of AFO’s,
Or the Cerebral Palsy organisation we still had sporadic dealings with,
Out of pure necessity.
And because neither of them had mentioned it,
I thought they would be as equally as excited about its existence,
As I was.
And yet I was hit with dismissive remarks,
Flat out disapproval,
And most shockingly a complete refusal to help adjust an Enable application to help fund the new found option,
Which were to meet Isaac’s needs more closely,
The preference of the family,
And private therapists,
As well as the specialist Orthopedic surgeon at the major hospital where they were manufactured,
And where Isaac was assessed three to six monthly.
It made no sense to me,
And with funding scarce,
And heavily relied upon,
I tried my best to battle out with them,
Justification after justification,
As to why these were superior in every way.
And yet I was thrown excuse after excuse,
From the expense difference,
To the unproven success.
And reminding them that they were not the ones who forked out the cash,
Or decided the worth of equipment,
But were simply who we relied upon to make recommendations on our behalf,
To have applications processed,
And judged accordingly by the funding body themselves,
Seemed to make no difference at all,
It was falling on deaf-by-stubbornness ears.
And so it was,
That this was to become beginning of the end,
Of my relationship with said organisation,
The start of a severe mental health decline,
Stress related illness,
Breakdown in personal relationships,
And the helplessness all engulfing,
That left me doubting if I could continue on this journey,
For another single moment.
While at the time I was not yet privy to knowing,
That the worst was yet to come,
That in mere months,
What would cause the pinnacle of my breakdown,
That which would ultimately lead to an abrupt,
Ugly sever of service provisions,
With a cruel, undignified and unprofessional flex of authority,
That would discontinue supports.
And while detrimental and permanently scarring,
Would also become the blessing in a black cloud,
The separation I needed,
Vital for my survival in this hash world,
Setting me free,
From the constraints,
Of a false-hope supporting body,
That while preaching to be for families,
Only had their own interests,
And agendas in place,
Moulding families to fit into their tidy little boxes,
Ticking the checklists off as they go,
Unwilling to think outside the rigidity they were accustomed to,
Endorsing shackles on children,
Who hold the potential to reach the stars.
The more I spoke to other families,
The more and more my story was echoed,
In slightly different scenarios,
But with ultimately the same theme,
And misuse of control.
Finding once again more value,
In others within a similar position,
Not from those who while paid to do so,
Only think they know,
Regurgitating rote-learnt ideas,
Nonspecific to the person in need,
Or their struggling families.
I did go on the source funding through other channels,
For the Bio-Flex boots,
Which our Feldenkrais practitioner loved,
For combining what we were seeking to achieve through a Piedro Boot,
But giving a slightly more supportive footwear,
That Isaac was proving to require.
And while the trauma of my future ordeal,
Would sit heavily with me,
I am proud I would become yet another fiercer version of myself,
One who can stand taller for standing up for what is right,
What I believe in,
And what most importantly of all,
Would best benefit my child’s development,
And his livelihood,
The one and only purpose,
Any of us should have,
The only goal that should remain ferociously inflexible.