“Please, Sir, I want some more.”

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“Please, Sir, I want some more.”

I was lying in bed this week and the image of Oliver floated into my head. I was debating with myself whether I dare ask for an increased care package for my son.

“Please, sir, I want some more…”

It’s an iconic line from classic novel that has been retold to generations.

I confess, I’ve never read the book and recall hating the BBC adaptation growing up. The images of grimy streets and sloppy gruel filled our home teatime on a Sunday (that’s how my memory recalls it anyway). I could smell the malodorous characters and it caused me to want to gag. So much so, I boycotted the privilege of eating supper in front of the television. Instead I chose to eat alone in the other room (it probably only happened once but it stuck in my head).

I can still see the vulnerable and fearful image of Oliver daring to ask for more. More beige, tasteless food because he felt so empty and in desperate need.

Asking for more support would require me filling out the necessary forms myself. Over two years ago my son’s social care input was ‘de-escalated’.

You heard me right.

A boy who has no level of independence, is entirely dependent upon others for his health, social and emotional wellbeing, has no regular assessments from social care. The current cuts hitting the most vulnerable in our society mean my family no longer have the required annual assessment stipulated as essential for a Child in Need. Even his EHCP (Education, Health and Care plan) failed to have an up to date ‘care’ component.

This means that the onus is on me to prove we need more.

This isn’t a unique situation. I have written before about how ‘fighting’ becomes a way of life for parents like me. I have to show that he is worthy. That I am worthy. I must show we really need help. And with any request for more support the threat of cuts hangs over us like the malodorous stench of the streets in Oliver’s day.

I have heard this veiled threat uttered more than once.

“Obviously, you can go back to panel and make a case for more care but you run the risk of them deciding to cut the care package you already have.”

So, I’m left feeling like Oliver, empty, desperate and fearful. It feels as though this level of vulnerability further isolates parents like me. It feels as though I have to prove I am inadequate and failing, in order to get support.

When the people who are supposed to support families, are the ones wielding the power that can ultimately make life more difficult, the balance is all wrong.

How amazing would it be to live in a society where the most vulnerable and in need could seek help believing they would receive a helping hand rather than disapproving look?

How great would it be for families to not feel like asking for help is a demonstration of failure?

Because this daring walk to the front, tentatively sticking my neck out to ask for assistance only comes after I have finally plucked up the courage to admit that I actually need more help.

By | 2017-09-13T09:54:20+00:00 September 13th, 2017|Categories: Help, Respite, Thriving not surviving|0 Comments

About the Author:

Qualified Nurse, Writer, Trainer, Public Speaker and unqualified parent of three. My days consist of Lego, laundry and loving three boys, one of whom has complex and life-limiting disabilities.

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