Missing The Mark

Answers take time.

Answers don’t come from direct questions.

I’m sorry it is not quick or easy, but life isn’t like that.

Life and connections are made over time and with a genuine interest.

You can’t force this to get what you need.

This isn’t about you anyway.

You are meant to be here for us, but you do it your way anyway.

Selective? Slow burner?

Call them what you like but you spend some time and I mean real time and you’ll see.

But you don’t.

Answers come creatively and its not a quick fix, answers take a while and in different ways.

You see, when you have relationships first and foremost you won’t need tick boxes or generic questions because you’ll have the empathetic response that is needed.

You’ll care because you’ve got to know them.

You’ll know how to talk to them and what makes them tick.

This can’t be forced because they’ll totally know if you are not being legit.

(You might need to sit on the floor or just hang out for a while)

This will take time.

This will take genuine interest.

This will take connection.

We’ve waited months, years?

I’ve left messages on a phone that’s never answered.

Direct questions.

Generic questions.

Frankly, pointless questions.

You do this and I let you.

(this is the double empathy problem playing out in all its glory)

You even ask me things I don’t want to my child to hear.

I mean, we don’t know you.

I don’t even have your phone number.

But we do this because it might work out, it might help?

Anyway I’ve explained it all now so we’ll just see it through to the end.

We’ve waited this long.

You never know..

Oh wait, now you’ve changed the plan.

But that’s not what you said.

Well, when?

How long?

I think that’s blown it.

I’ve blown it.

Right, I’m going to complain, this isn’t okay.

Oh I forgot, no one answers the phone.

You think we want the same things because what kind of parent would I be if I didn’t?We all know your goal..

School is best.

School is friends.

School is GCSEs.

School is success.

School is future.

This goal (obsession if you like) of school is yours not ours.

Our way doesn’t come with pomp or ceremony.

We won’t have that photo album.

We certainly haven’t got those milestones.

I know we don’t have what others have.

We definitely don’t have it all.

The uncertainty takes a mental strength that on bad days can immobilise me.(I learnt ages ago that comparison will actually do you in)

But then I only need to remember those days before.

So I smile and check in occasionally.

But I keep our secret that our golden ticket isn’t what everyone else’s is.

So we can pretend if it helps..

We nod, smile and go to the occasional meeting and answer your generic questions.

So what I’m trying to say is you can keep your Golden Ticket, it wasn’t what it was cracked up to be.(You were having us on)

Here we go..

The positive spin.

Whatever was working you are taking away.

“Because they are doing so well.”

Here we go..

Things have picked up so now its time to do without.

The Rollercoaster of Support.

The Inconsistency.

The Token Gesture.

Years of Give and Takeaway.

Up and then down.

But what you forget is one good day or week doesn’t mean my child is ‘cured.’

They don’t stop having needs.

They don’t stop being Autistic.

I know, they’ve been doing really well recently, that’s because we had a teaching assistant and now you are taking them away.

So you are not going to write that report then?

Here we go again..

I want you to see what you’ve done, that this is not okay.

You kept me in the dark for years and got away with it because I trusted you.

I’m sad, mad and really disappointed.

So I keep trying.

All those meetings that I don’t get paid for.

Those emails and waiting, oh the waiting for the phone calls.(No caller ID- I need to get this)

I want you to hear me.

I want you to do what you should have done years ago.

So I keep trying.

But what’s it going to do?

I’ve already used up a lot of time.

I want to you to see, to change.

But I’m just getting more disappointed.

And this is time I could be with my child. This is time I won’t get back. This is time when my child needs me.

Anyway nothing is a guarantee because life is full of curve balls.

I mean I might get one small ‘win’ but what about the next?

Anything can happen.

The future cannot be fixed or planned it doesn’t work like that.

But what I do know is my child is growing fast and I won’t get this time again.

So I’m not wasting it in another meeting for meetings sake.

(It just makes me feel depressed)

There’s other stuff I want to spend it on.

I just wish you’d see but you won’t.(if you did you wouldn’t be in the job in the first place)

So I’m off to watch telly, I’ve used enough tokens already on this nonsense..

The balancing act.

The juggling.

The keeping it all together.

“Have you had a bad morning?”

No, just an average one.

You ask me about my job, my career.

This I am holding on to by a fingernail.

This, is having less and less relevance.

My job, my real one is hanging in there.

This is taking everything I have got.

I do this every day and for who?

Because all of us are existing but hardly thriving.

This is before we’ve even begun and then I have to begin.

This is so you can make it in before you spend the next six hours there.

I’ll do the same when I pick you up.

I’ll tread on eggshells.

At home, you’ll barely speak.

Surviving not thriving.

“Why? Have you had a bad morning?” No, just an average one.

Unfortunately many of us have either been in, or know someone who has been in a relationship with someone that is completely and utterly wrong for them. 

Now  – imagine one of your friends is going out with Gary.    Gary is a complete git.  He does not care about your friend and does not have your friends’ best interests at heart.

Gary is controlling.  He tells your friend what to wear, who to talk to, what they like and don’t like doing. 

Gary suppresses your friend’s creativity.  He tries to mould her into something she is not.  Gary tries to stop your friend from being their true, authentic self.  You know that Gary is really bad for your friend’s mental health and slowly but surely you see that your friend loses their identity and stops being themselves.  Instead, they become a shadow of who they used to be.

Eventually your friend realises that Gary is indeed a complete Git!  They leave Gary and slowly start to heal and mend and you all celebrate your friend ridding themselves of someone who is utterly toxic and wrong for them. After time, your friend starts to heal, recover from the trauma of such a toxic relationship, they feel like their old self again and you see their true authentic self return.

NOW – can you imagine in this situation that once your friend is better the general opinion of everyone is, “Oh!  It’s so good you feel better – you are well enough to go out with Gary again!!!”

Or – “I am sorry but I am afraid to tell you that since you have embarked on a relationship with Gary you need to stay with him and get married – even though he is a total git and really damaging to you and your mental health.  You cannot possibly consider a relationship with anyone else!!”

This would be seen as utterly ludicrous!  However, every year thousands of children are forced into a “relationship” with an education system that is utterly wrong for them.  They are forced into a system that does not care for them or have their best interests at heart.  A system that suppresses their creativity, that tells them who they should be and tries to mould them into something that the child is not.  Worst of all a system that is bad for a child’s mental health and chips away at their true authentic self leaving them feeling that they are not good enough as “themself”

Worst of all, when trying to remove their child from this system parents have to fight so hard for better alternatives.  They have to fight for alternative provisions or EOTAS packages.  They have to justify WHY they want to remove children from a system that is harming them.  And then, even when the alternatives are granted, or agreed on, once the child has slowly begun to recover and heal from the experience of being in this system the pressure starts to creep up and the parents are told, “we really need to start thinking about getting them back into school again!”

Our children don’t need a one size fits all approach to their education.  Our children need alternatives that nurture them and care for them.  Our children need an education that helps them be their true authentic self.  We need to stop thinking of alternatives to our education system as “less than” the norm – and parents need to stop having to fight so hard to justify these alternatives and keeping them…….

(this post was made with in collaboration with Positive Autism Support and Training)

You say these things but what do they actually mean?

When my child is at home and not sleeping and talking.

You can say all you like in the way of positives, but who is that helping?

Not my child who comes home and crashes and breaks.

I try to tell you over and over.

I share this stuff because you are the gatekeeper (or so I thought)

You do not hear what I am telling you.

You let me cry and share things that I don’t want to share.

And you fob me off.

You tell me I don’t need things I actually do.

You tell me I won’t get it anyway.

You are not listening.

Your words are empty.

What are you writing down?

What help is this for my child’s future?

None, but that’s not your problem.

So you pass the buck, the tissue and the head nods on to the next chump.

Anyway “they’ve had a lovely day.”

Where are the courses on pathways?

I didn’t even know I could apply for an EHCP myself.

Where is ‘an easy guide to SEN departments’?I’ve lost days leaving voicemails in the hope someone picks up/knows the answer.

Why do I need to go through them to get to them?

Where are the autistic advocates?

Where’s the ‘know your rights’/’empowering parents’ course?

What about courses on ‘masking’ or ‘autistic experience’ or ‘improving education for the neurodivergent’?

But I better go or they’ll really blame me.

Learner? Or Loser?

I blame the parents..

When we are working with outcomes, targets and assessments everything is measured and quantified.

Everything has to be proved. Everything must be fixed.

(And there is always a timeframe)

Can you evidence that?

So there is no room for being unsure, or not knowing or even that things just are.

Because we need to explain, we need to know why, so that a solution can be found.

“Why don’t they like..PE/School/Homework/Sports Day?”

But actually, when you step away or back..You get space and you learn about the bits that really matter and what really makes a difference.

That:

It’s okay to say sorry.

It’s okay to work together.

It’s okay to not feel sure.

Targets? Goals?

What matters to many/most is different to what matters to us..

I just hope that one day more places exist who know what we know now too.

That:

It’s okay to remove hierarchy.

It’s okay to work together.

It’s okay to do things differently.

It’s okay because you are okay.. just the way you are.