I’ve been having the same conversation for two years

The long and winding road of advocating for a disabled child. Over and over and over again. Aka Mother the Fuck Up in action.

I am still having the same conversation.

Two years later.

Different people.

Different job titles.

Different meetings.

Different forms.

Same fucking conversation.

The context - My son cannot access school.

The obvious solution - We need to find another way.

The answer - No.

It comes back dressed up in different language every time, but it is always the same answer:

He needs to get back into school.  That’s it.  That’s where every single conversation or intervention ends up.

It is 11am.

The sun is finally shining after weeks of relentless rain and I'm about to take my son and the dog for a walk before I hold the first writing circle for the women contributing to the collaborative book project I’m curating.

The phone rings.

It's school.

I glance at the screen and immediately feel my stomach tighten.

Because I already know how this conversation is going to go, just like every conversation before it.

And I am so fucking tired.

Not physically tired.

Soul tired.

The kind of tired that comes from saying the same thing over and over and over again and watching it bounce straight back off the people who most need to hear it.

I have now spent two years in meetings, phone calls, reviews, consultations, assessments and discussions.

Two years explaining.

Two years providing evidence.

Two years gathering reports.

Two years learning legislation I never wanted to learn.

Two years becoming an accidental expert in things I should never have needed to become an expert in.

And still, somehow, I am having the same conversation. Still arguing about the wrong answer to the wrong question.

The most infuriating part is that none of this feels particularly complicated to me.

In fact it seems, on the face of it, really quite straight forward : 

My son has a right to an education.

My son cannot access school.

My son can access learning.

These are not the same thing.

Yet, for two years, we've all been pretending they are.

And so every road somehow leads back to school.

Every intervention.

Every strategy.

Every suggestion.

Every accommodation.

Every solution.

School.

What if we tried this at school?

What if he came in for ten minutes at school?

What if we built a relationship with somebody at school?

What if we offered him this support at school?

He cannot get into school.  How many times does this need to be said, reported on, documented.  I have cycled through the entire rainbow beyond blue in the face at this point.

It's like watching somebody repeatedly push a wheelchair towards a flight of stairs and then acting confused when the person can't get up them. But demanding they do anyway

What if we gave them a wobble cushion?

What if we offered Lego?

What if we put a friendly person at the top of the stairs?

No!

Just bring the fucking wheelchair department downstairs. please.

What nobody tells you about parenting a disabled child is that eventually you realise nobody is coming.

Nobody is going to care about your child as much as you do.

Nobody is going to fight harder than you do.

Nobody is going to spend sleepless nights wondering what happens if this never gets fixed.

Nobody is going to carry the weight of their future the way you do.

And slowly you also realise that your child's needs are competing with targets, budgets, attendance figures, policies and agendas, and invariably, those things seem to win far more often than they should….And then they will massage the truth and sidestep the issues until you feel entirely demented.

So whether you want to or not, you become the advocate.

You become the expert.

You become the project manager.

The administrator.

The strategist.

The researcher.

The note taker.

The challenger.

The absolute total and utter pain in the arse.

You learn the law because you have to.

You learn the loopholes because you have to.

You learn who has responsibility for what because you have to.

You learn which conversations matter, which battles to fight, which words unlock which doors and which hills are worth dying on…and sometimes you learn this way too late, and with hindsight, or by talking to another mum (it’s always the mums) who had a completely different experience to you  because she accidentally stumbled upon some magic password somewhere that you didn’t know about.

You do all of this, because you have to.

And the hardest part isn't even the learning.  I love learning.

It's the persistence.

It's having to keep going when you've got absolutely nothing left.

It's writing yet another email when you're already drowning.

It's attending yet another meeting when you've already said everything there is to say.

It's restating facts that should not need restating.

It's continuing to advocate when you've lost faith that anybody is actually listening.  Let alone believing.

It's putting your own work, your own ambitions, your own life on hold because there simply aren't enough hours, enough energy or enough versions of you to go around.

It's waking up every day and deciding that, however exhausted you are, you are not done yet.

That you'll make one more phone call.

Attend one more meeting.

Write one more email.

Challenge one more decision.

Push back one more time.

And then one more time after that.

That's what Mother the Fuck Up means to me.

I am not fearless. I do not have all the answers. I don’t always know what to do next.

But I will not be placated.

I will not be nodding along because somebody used an official-sounding acronym.

I will not be assuming the person in the meeting must know best because they have a job title, a lanyard or a PDF with my child's name on it.

I will not be rolling over and accepting a version of reality that makes my child the problem. Or one that centres what’s easiest for the system instead of what’s right for my child.

And I refuse to abandon my child.

My son who can spend three hours teaching himself something nobody asked him to learn.

The child who will talk passionately about the things he loves.

The child who can invent entire worlds inside his own mind and then build them in intricate detail inside Minecraft. 

Who can spend hours in character deep inside his own imagination.

The same child everyone keeps insisting can't access education.

Nobody wants to talk about the fact that he loves learning…only where they think it should happen.

This child deserves more. Deserves better.

He is not a tick box or a statistic on an attendance chart.

And so I refuse to stop.

I refuse to surrender my own judgement, to sit down and shut up when what is being asked of me, or my son, goes against everything I know to be true.

Instead I will be relentlessly asking awkward questions. Demanding clarity, accountability.

There are days when I am hopeful.

There are days when I am furious.

There are days when I am completely and utterly defeated.

Days when I genuinely wonder whether anything is ever going to change.

And then I take a breath.

I gather up the scraps of energy I have left.

And I do it again.

Because my son needs somebody in his corner.

Because his rights matter.

Because his future matters.

Because he matters.

And if that isn't Mother the Fuck Up, I don't know what is.