How do you describe what life is like?

I often try and articulate- and fail to describe what makes life more tricky.

Why we become anxious (we do not start out this way)
It is the uncertainty, we live in flux, we do not know.

But we are often working with systems that need to measure and assess.
They need to evidence.
They need to tick a box.
Sometimes, always, never?

The inconsistency creates loop holes you see..
“Well they were fine last week, so let’s see how it goes this week”
“I’ll phone you next month”
“No, wait!” (Please)

One thing I know is I live with this all the time and it is not easy.
So please, can you give me something concrete?
Can you say when you will call?
How long will I have to wait?

Does uncertainty + uncertainty = madness?

So I sit in those meetings and I often can’t answer those questions.

“Why is it like that?”
“Have you tried..?”

Waiting for a maybe.
Waiting for something a bit more concrete.

“What is it you’d like us to do?”

End of Term..

Meetings.

Courses.

Emails.

Phone calls.

But what is going to happen next year?

How are they going to cope?

I mean, they’ve barely scrapped through the last few weeks.

And now? There’s no time left.

So we phone and we email.

(Oh and everyone in the LA is on bloody leave)

End of term.

Our children are feeling it and we are feeling it.

Uncertainty = Anxiety.

End of term.

Fun times, timetable changes, dress up days, outings.

Changes, changes, changes + exhaustion.

“Do you want to sign the thank you card?”

End of bloody term.

One thing is for certain though.

Is they have you and you will sort it out for them.

You will figure it out, even if there is no solution.

Because they have you.

They may not show they need you, jeez they may even seem mad as hell.

But they need you.

You may feel helpless, you may feel angry, hurt, let down.

They need you.

What will be most important through it all.

Is you just being there for them.

They need you.

And remember we’ve all been there.

We get it.x

“Are you ready to learn?”

Harry Thompson – PDA Extraordinaire said going to school he felt he was “preparing for the gallows”

Nervous systems are already in a state of defence.

Disregulated and in hyper arousal.

This is how many begin their day.

“Do you want to point to what you are feeling right now? Are you blue or red?”

“Why do you think you find it hard? Is it too noisy?”

How do you convey to school that your child is surviving every day?

When this has become your ‘normal’?

I mean, what even is a good morning?It can’t be sorted out with some headphones or a visual timetable they need co-regulation and connection.

They need an environment that supports their neurosystem.

They need safety.

They need people to support them.

“But they are fine when they are here”

“They had a lovely day”

This is our child going to school, everyday.

The one you say needs to toughen up.

Now they can’t do it anymore. Now they are at home.

Trudging for days for supplies, gas lighting, sent to the mad house, begging bowls.. “Please sir..”

No we are not in Hogarth painting, I mean we have emails and a telly, but..

Years and years on wait lists.
Trying and convincing to get the right support.
Court Cases (I mean, actual court cases!)
Neurotypicals saying they know what is best for our children.
ABA/PBS
Prints outs for support.
Sitting in corridors.
No school.
Resilience.
Toughen up.
Get on with it.

This is some of it.
This is what diagnosis brings.

We are made to feel like fakers and freeloaders who are probably piling it on a bit thick or mentally unstable (“mums very anxious”)
So we have to learn more about laws and rights and fill in more forms, send more emails.
We get sent down long fruitless paths to not a lot.

I do wonder what we will think about all this when we look back in a hundred years?

Inclusion and inclusive.

No one wants to stand out for the wrong reason.

These have lasting impact on our children’s wellbeing and self esteem.

Attainment and achievement is different for many children and being included is often more important than anything else.

Inclusion is not a corridor, is not putting them with the younger kids, is not a table set aside.

Inclusion is an environment where everyone feels safe, calm and connected.

Inclusion is not children who cannot attend.

What we need to do is make adjustments and change for them.(we are the adults remember? We can do this and forget the bloody targets)

My aim is make my child know they are exactly who they are meant to be.

That they belong.That they are okay.

Phoning phone lines that never gets answered.

Leaving voicemails you know will never get returned.

Sometimes I even ring or email random slightly connected people just in case I have found a new secret pathway in.

But what you can’t get your head around is how on earth you can run a system like this?

If you had run your business like this it would have been game over after the first client.

And the unfunny bit is this is kids lives, families’ lives.

Working with a system that either ignores us or thinks we are all out on the take.

Trying to wangle and con.

Who on earth would try and fake and con for this?

It is the worst business model I have ever seen and the worst thing of all is we need it.

So I’m stuck with it.

We are all bloody stuck with it.

Because our children deserve an education

(or something/anything at least.)

When you get batted between services it takes up so much time..

It is a stalling tactic that only means our children spend longer without appropriate support or provision.

The more unpaid time we spend on admin the less (unpaid carer) time we have with our children whose needs mean they often need us a lot. (we are mopping up the fallout remember?)

Ironically these civil servants get paid to play this game of cat and mouse and we don’t, we really don’t.

I mean, we all know how to cc’d an email these days, don’t we?Apparently not.

Safety is not pointing to faces on a piece of paper.

Safety never comes from a piece of paper.

Safety comes from relationships.

No one learnt to self-regulate without co-regulation.

You can’t do anything when your nervous system is shot to pieces.

That blank face wasn’t calmness it was complete shutdown.

We need connective subjects; art, making, doing, chatting.

We don’t need pictures of feelings, we need to learn through doing and being with people.

Regulation through others is not weakness; it’s validation for our feelings.

It is okay to be who we are.It is okay to take time to get there.

Sitting outside a classroom may be better than the other option, but really is that the best we can do?

(I’m just sorry I didn’t come and get you sooner.x)

LikeCommentShare

We didn’t discover a landscape of learning and discovery post diagnosis.

Because..We didn’t get courses on anxiety, masking and burn out.

We didn’t get to hear first hand experiences.

We get told, “it will be fine” and “they will be fine”

How will it be fine?How can it be?

We need to share knowledge and we need honest conversations.

Because being given sticking plasters and blinkers and head tilts is not enough..

Our children are going to a place everyday that does not feel calm or safe.

Yes, some of us eventually get an EHCP, but with or without a document that we can use as leverage to show other places of learning, ultimately what does it mean? What value does it hold?

If we do not have true understanding.

You can schedule in some sensory breaks (that my child won’t take because it will make them stand out from the other children)

You can give them some colours to point at to say they feel mad or sad.

Let’s start by really trying to understand what an average day is like for our children.

It is time we start making some really big changes from the ground up.

Because it is not fine. Our children are not fine.

‘We’ve let you in a thousand times; meetings, phone calls, home visits and I’ve even gone on your courses.

You pop in our lives for an hour and then you pop off.

You bring your checklists and your generic questions and then you are gone again.

This isn’t about my child and meeting her needs, this is about evidence for you to say there aren’t any.

It doesn’t make things better, it makes it worse.

My child has learnt to mask in front of authority and you know that but you still come in and ask your generic questions.

There are lots who profit from our children and there are also those that believe the system works and think our children can fixed to make it work.

We can choose and we can politely decline..

So I politely decline.

I can protect my child, that is okay.

It is not in their best interests.

I’ll do the ones I need to do but, the rest? I mean, if you want to come over and build up trust and hang out, that’s fine.

But that’s going to take time and probably money.. Oh wait. You’re busy?