An Evil Twin

Life advocating for a child with additional needs.

**Audio doesn’t match the words but wanted you to feel my raw despair**

Another day, another school exclusion.

I have an autistic son with VCB.

If you are a lay person (where does that even come from?), you may not even know what that stands for.

It stands for ‘violent and challenging behaviour’.

I am regularly hit, kicked, spat at and verbally abused.

I don’t say this to shame my son in any way because I know it all comes from a place of anxiety and him trying to manage his well documented sensory needs.

I get it.

He struggles.

And life itself can be a struggle.

As a prospective parent, you roll the dice and commit to that.

Get what you get.

There is a oft quoted story, about how when you have a child with additional needs, you grieve for the child you thought you’d have.

The life you envisaged you’d have as a ‘normal’ family.

The sleep overs, friends for tea, birthday parties.

Little things like being told “I love you”.

Your child calling you “Mummy”.

Things most people take for granted.

And that is partly true but let’s face it, it’s an ableist story.

Well, I’m going to tell you a different one.

When you have a child with an additional need, the disability is NOT the main issue. After all, you love your child regardless.

No, the problem you didn’t bargain for, is that you get an ‘evil twin’.

It’s not a person.

It’s a system.

THE system.

The system you previously kept at arms length becomes your new best bud.

A mate no-one wants.

The system that previously left you alone, so long as you were a *good citizen*, now scrutinises your parenting as though you are a fish in a bowl.

New Mother meet Big Brother.

And before you have a child with behavioural difficulties, you judge.

I admit, I did!

“Additional needs”.

ASD, ADHD, SPD, PDA…..

S & M, KY…..

(Okay, okay…...I jest with those last two😉)

But letters can clear the room like a dog fart.

Who doesn’t have some new fangled alphabet soup after their name these days?

“Must be the parents”

Old me sometimes thought.

“Why do they let them get away with it?”

These entitled folk who think their over sugared little divas and demons need taxis, trampolines and bloody lava lamps.

Was it not enough that they got to the front of the queue at Alton Towers?

Alright….I wasn’t quite that narrow minded but life certainly has a funny way of humbling you, doesn’t it?

And ‘meeting need’ doesn’t always look like a wheelchair or a hearing aid.

It was a steep learning curve.

How grounding my early parenting ‘journey’ was!

In the early days, I often wished I had another child just to prove to others that my child’s difficulties weren’t my fault.

“See? That one isn’t like that! I didn’t do it!”

I apologised a lot.

Oh how I apologised!

I saw this on my Facebook the other day and I cringed.

In 2018, I was still clearly at the ‘sorry’ stage.

He’d have been six years old.

Just six, yet I felt the need to justify myself for my son’s needs not being met.

Fuck. That.

I’m not fussy. I’m really not. I’m as far as you can get from the “my child is an untapped genius” brigade.

I have only two requirements.  Firstly that my son’s needs - not wants- are accommodated and secondly, that his potential is unhindered and free to flourish.

This seems however, to be akin to asking ‘Snickers’ to change their name back to ‘Marathon’, and chewing this beast over is far from satisfying.

He has the right to the therapies he requires.

He has a right to a full time consistent education.

He has a right to a school that can not just handle his documented needs but where he can thrive.

He has a right to a full and varied out of school social life including clubs and sports.

He has the right to travel to school in a way that encourages his independence and ensures everyone is safe.

And I have the right to a life.

To be able to take a full time job should I wish.

But there is none of this.

And everything he does have has been down to me. Pushing like crazy for the basics.

Every report.

Every assessment.

Every diagnosis.

And with each new hurdle, you think - hope -it’s the end.

It never is.

You need the diagnosis to get the help

You need the right reports to secure the EHCP.

The whole the time there are officials trying to send you on detours round the houses, delay and save money.

The whole time you are trying to spot the helpers from the blamers.

Supporters from shamers.

Trying to distinguish real tangible help from the distractions of shiny bullshit courses and empty words.

You become a student of law.

Because you have to.

Form filling, appointments, emails and chasing people up becomes your full time job.

But for all of this, the thing that angers me most is myself.

Yeah, ME.

That at the moment I do not feel able to ‘opt out’ and electively home educate my child full time.

He is in year 6 and only one high school (and I emailed 26) have said they can meet his needs.

ONE.

It doesn’t have a good Ofsted and there are reports of bullying.

How fucking inspiring.

So, I either have to take it - a school I distrust - or home educate a child with violent and challenging behaviour. A child funded for 2:1 adult support at school.

Yep.

That’s choice in 2023, folks!

And if you’ve never had to deal with this, you may think;

“oh that doesn’t sound right!”

After all, they sport all the fancy letterheads - ‘inclusivity’ this, ‘diversity’ that.

No. Sorry to disappoint you.

It’s all bollocks.

And I hate myself for having to be a part of that system.

I want to shake it like fleas from a dog.

But I’m human.

And right now I don’t feel able.

He is loved.

His evil twin of the system is loathed.

So in the meantime, I will keep fighting that system with all I have.

Not just for my child but for every kid who comes after him.

And one day, maybe the system won’t be an obstructive evil twin.

Maybe kids will have a helpful supportive angel at their side.

Enabling.

Understanding.

Advocating.

Helping them to grow and thrive.

Until then, my son has his mother.