Autism, brain injury, poem, SEN parenting

A Mother’s Guilt..

Have i made the right decisions?
Do you have the care you need?
Or indeed deserve.

Do your therapies make a difference?
Or are you missing out?
I just want to see you play.
Should it be more about your childhood,
Instead
Of your rehabilitation?

I fought for your medication.
But do the tablets help you?
Do they even touch the sides
Or reach their destination?

There it goes again
My fixation
On the jumbled neural maze
That your brain injury left behind!

I overcompensate I know
Just have to do the best by you
Frantically researching,
Deliberating
Self berating

You should be wearing pads
Is my goal too optimistic?
For your eventual continence
They say you’re quite Autistic

(Though such a spiky profile)
You don’t know when it’s coming.

Is your school place right for you?
I had to fight your case
To get you in there.
Now I wonder if they are caring enough for you?
Should you be exposed
To all that violence and aggression
From the other kids?
Rituals and obsession

You are not the same as them.

You need more one to one
To bring you back ‘in the room’
Special school has its trade offs.

But mainstream, you are not
We must avoid the general public
Should I keep you hidden?
Your noises, behaviours forbidden
By the jeering, disproving stares

The guilty, pointing fingers

Though it’s really only I
Who is to blame.

SEN parenting, Stoicism

“Hello” she lied.

I’m writing this blog, my first for some months, with a new perspective. My father died recently and I guess I am beginning to traipse through some of the stages of grief.  

Right now I just feel so angry. Not because Dad has gone, (I don’t think that has even begun to sink in yet), but because the world can be so petty and trivial. My tolerance, patience and resilience are depleted and I just don’t want to engage with the mundane.   When people say trivial things or present me with little niggling problems or issues to address / add to the pile (as so often happens with special needs parenting), I want to say ‘No that’s not important’, or ‘No that doesn’t work for me’, or just ‘I don’t care about that’.  

I’ve called this post ‘hello she lied’ quite simply because even saying hello to (some) people right now does feel like a lie. What I actually mean instead is, ‘leave me alone.. ‘ 

There’s a part of me that likes to please everybody, keep people happy by ensuring their needs are met over my own. To the point of self-sabotage. Fortunately for me, special needs parenting naturally brings with it an incredible inner strength and drive. Suddenly catapulted into this minefield and wholly governed by the need to nurture and protect our children, special needs parents can’t afford to be a walkover. In order to get our children’s needs met, we have to speak out rather than comply.  

A very wise psychotherapist pointed this out to me last year and gave me my favourite quote yet:

‘Compliance is annihilation of true self’ – Donald Winnicott.  

And my new perspective is actually quite empowering. As a special needs parent, life is rarely trivial or mundane anyway. There are constantly big issues to deal with and lots of smaller ones too. Always. It’s actually vital to be able to put things in order or perspective. This matters. That does not.  

And to remember that it’s ok to run out of resilience. Especially having just lost a loved one! I’m having a tough time right now and that’s ok. It was my dear Dad who always told me ‘stay stoic’ and it’s thanks to him that I am writing this blog.  

Somebody I love has died and it hurts. There’s nothing more to say.

‘Who maintains that it is not a heavy blow? But it is part of being human’ – Seneca (on death) 

 “Goodbye”, she explained – the stoic mother.