Allegedly, I’m shielded by a team of professionals around us who meet and collate information to make sure, as a family, our needs are met.
They also have the hard task to integrate our child into a mainstream setting and one of the biggest battles always reverts back to the educational handling of a condition few people know anything about.
And one of those unmanageable tasks is actually what happens outside of school and in particular with the use of social media – I guess it almost magnifies the lack of control we have as parents.
So, I did the school run yesterday, having woken up on a relatively good morning. Here was my first mistake: I was relaxed and behaving like a ‘normal’ mum.
I smiled and passed exchanges with parents en route.
Then I found out something that sent me into an unprecedented state of panic.
I didn’t have my armour on and my emotions were exposed just enough to send me over the edge.
A group of parents had used an online forum to exchange views and versions of behavioural incidents that had happened at school involving my child.
Not only did they debate what could be ‘wrong’ with her but assumed that maybe she had ADHD or was it Autism?
Or maybe it was just down to the parent that they had seen on the playground who had no control of the child?
So parents began to ask their children what had happened earlier in the day at school and then the name was dropped of the child that had done it.
Yes, my child.
In black and white for a whole class of parents to discuss in a secret forum.
Parents had been shocked and angered by the severity of the incident forms that had come home and needed to vent.
I understood that part – I had felt the same thing too. I had also broken down in tears about it only nobody knew about that.
I had called the school and discussed that these were written with such detail and without further support which would inevitably typecast us further into a bad family bracket. The headteacher said there was nothing she could do about it and I hung up the phone, overwhelmed and flooded with tears of rage.
We were actually vulnerable and suddenly my worst fears were playing out before me.
Prior to this, I had been desperately approaching parents on the playground in order to explain behavioural incidents further and that my daughter had additional needs.
I felt like a person campaigning to explain, to be understood, to not be judged. I just didn’t get to these parents in time.
If I didn’t care or was a bad parent then maybe it would have been easier because I could have just carried on.
But I couldn’t.
I would never condone violence or accept my child to hurt others.
In fact, that is why I never let her out of my sight. I am run ragged always watching to protect not only my daughter but others she comes into contact with.
I think I hit rock bottom yesterday and I got scared. I lost all control.
I felt so angered, saddened and frustrated that I lost it in the street.
I came home from the school and began screaming, crying, grunting then finally kicking the fence. I became feral as I began uttering sounds – it truly was the last straw to send me over the edge.
It felt completely out of my control what was being written about us and I felt so heartbroken and victimised.
My eyesight was hazy and I was unaware of onlookers.
My dad found me and put his arms around me, picked me up and ushered me to the car. He used calming tones to reassure me things would be ok.
I had lost the sense of reality and the fog of frustration had descended on me.
I have never experienced something like that before.
My poor father, who had been concerned lately of my fragile mind, had tears in his weary eyes as he uttered “your pen is your sword.”
He was right.
In that forum somebody had stepped up and put the gossip to a halt.
That parent referred the group to my blog and explained the condition to the best of her ability.
It shed some light on the situation.
These words on these pages paint a different story.
One of tragic sadness, one of desperation and one of what life is like with a hidden disability.
It may also highlight ‘that’ child who has been so fraught with anxiety in the past that she was unable to go to the toilet for days because her whole body shut down and she could not follow daily tasks.
A beautiful child who cannot control a condition she has and wishes she had a different brain.
And of a mum who cannot guarantee that her daughter will be able to live independently as she grows into adulthood.
If they had of asked me in the playground then I could have told them all about these things.
All of my sadness and grief of having a child who is not just like theirs but of a daughter who I am often very proud of for overcoming daily obstacles.
I want to shout from the houses that she can go to the toilet now – what an achievement!
My estimations have changed – I don’t mind if she can’t read like her peers, or do multiplications or recite the lines of a favourite poem.
I simply want her to be able to integrate into society.
I am truly sorry that my daughter attacks, it is her response system. It is not an excuse, but an explanation.
I am also embarrassed by my own performance in the street – my meltdown. I can guarantee that my daughter feels a range of emotions about her own behavioural responses.
And here I am, writing another blog. I am fractured, admittedly, but I’m not fully broken.
I will put my armour back on to fight another battle. And I will use the cathartic route of writing as my weapon.
I’m strong like a warrior. I can fight like a warrior. I will write like a warrior.