Missing The Mark

The thing is they hit you where it hurts..

“Don’t you want to give them the best chance?”

“What about friends?”

No parent wants to see their child struggling so they send you on training courses.

How to be a better parents.

How to have a better child.

Someone is telling (ever so nicely) there is a better way to do it.

Because then your child will go to school.

Then your child will be like everyone else.

ABA, PBS is snuck in everywhere.. Parent groups, Special Schools, Support Groups, Coffee Mornings.

“Don’t you want them to succeed?”

Yes.

I want them to grow into who they want to be, whoever that is.

I want to see environments flex and adapt.

I want them to be themselves.

My child is who they are meant to be.

You and I are different (you like weddings, I hate them)

That is okay.

What is not okay is teaching children to pretend to be someone they are not.

What is not okay is training them to change or fit.

Change the environment, not the child.

(By the way they tried to pretend for years and it broke them)

What do you say about me?

When I’m worried that my child has been sat in a corridor for weeks on end and distressed at home..

‘Mums very anxious’

When you talk about the importance of your job and your workload/number of children you have to deal with, again and I break down because I know you won’t help us..

‘Mum was verbally abusive’

So I have to be nice because I don’t know what else you’ve written down.

Assertive could be noted as rude.

So I am amenable, not too knowledgeable.(I’ve heard the horror stories, haven’t we all?)
I nod my head to your banal and obvious suggestions.

And I smile at the scraps you offer.(Because we need whatever help we can.)

I say thank you to the leaflets.
And I smile.

I go to another meeting for meetings sake.
And I smile.

And we carry on with it pretty much the same as it ever was.

And I smile.

Healing didn’t come from egg timers, access to a sensory diet, a time out card, meetings or books about autism geniuses (people just like you)

Healing didn’t come from meetings.

Healing didn’t come from a home to school book.

Healing didn’t come from a hub.

Healing didn’t come from group therapy or a checklist.

Healing didn’t come from people we only ever saw once.

Healing came from watching telly.

Healing came from mucking about.

Healing came from being together.

Healing came from staring out the window.

Healing came from pets, slippers, cushions, sofa.

Healing came from pancakes..

‘Mum’ says:

Guilt is not good because guilt doesn’t go away.

Guilt has made me tidier than I ever was and more polite than I ever was.

Guilt has made me more worried.

‘Mum’ says:

That the guilt does other things it brings in blame.

Why are they like that?

And that says they shouldn’t be who they are.

Are you saying they should be fixed?

Any trauma you feel you need to share?

How was your birth?

 (I have actually been asked this by a man I’ve never met before)

So I walk on eggshells, trying to better and trying to stop life throwing up any variables, because then there’s a reason.

A reason so you will even less inclined to help because; well then it’s my fault.

“mums extremely anxious”

‘Mum’ says:

But you don’t look at other mums who lead free, chaotic and fun lives and see that their children are fine.

And you don’t look at your institution and your ways and think ‘maybe this isn’t okay for everyone’

Maybe it can do more harm than good.

No, you look at women and mothers and remember some white man from years ago blaming cold (refrigerator) mothers and you go with this.

Because if you blame ‘mum’ then you can send her on some parenting classes and you’ve done your bit.

I mean, you start changing it for one kid and they’ll all be wanting special treatment.

Well ‘mum’ says: they were actually fine before they started coming here.

What you don’t see is dinner being made several times and still not eaten because I bought the wrong brand of sauce and the pan tasted lemony.

What you don’t see is that I’ve sat up half the night trying to settle them and help them switch off (yes they do have a bath/routine)

You don’t see their shorts have been washed and this has tipped them over the edge.

You don’t see the extreme meltdowns.

You don’t see shut downs.

You don’t see the tics.

You don’t see the insomnia.

You see parenting courses, coffee mornings and an anxiety workshop.

You see a game of Uno with their favourite TA twice a week.

You see them tick that afternoon registration.

You see “they are fine when they are here”

Because what you don’t see is what you need to know, my child is not okay.

It is not won’t it is can’t.

So please don’t talk about attendance or resilience because right now, with those reasonable adjustments you’ve made they are surviving.

We are all just surviving..

NB. (and you never see those looks I get at reception when we turn up late again.)

When you were sick and stressed you needed me but you also rejected me.

What no one saw was I was the person who you showed your real distress with.

I was your safe place and person but this distress hurt us both.

You couldn’t let me near, but at the same time you needed me.

Until you were so sick you stopped and shut down and off.

You were done, I was done, we were done.

The wheels fell off.

Healing has not been therapies but connection at home.

Once we were able to remove the cause of the stress (school) we were able to spend it connecting again.

It wasn’t fixing, it was being.

It was time, just time.

It’s been two years and while it’s not always been easy it was necessary.

You needed this.

You’ve let me in, because you feel safe.

I think we are ready for the next bit now..

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Unit/hub?

Sift/separate?

Equal/different?

Adaptations, to a point or it’s the other place.

Solutions for who?

I guess it ticks the attendance box.

I tell you that you were born who you were meant to be.

To be proud of your creative, funny, bright and sensitive self.

To be yourself..

(But separately)

I suppose it has a beanbag and some fairy lights but you’d rather be doing DT with your friends.

Inclusion or separation?

We could make it flexible and smaller and more individualised for everyone.

We could relax on the whole nylon blazer and traffic warden school shoes.

We could explore an interest-based curriculum.

We could spend less time on diagnosis and more time on individualised responses.

We could have less children standing out for the differences.

We could move to a more progressive way of learning, reflective of the working world.

Or we could just make a room with a bean bag..

Dear whom it may concern.

I know you are overworked and overstretched and here I am, being ‘that’ parent and asking you to do this, do that.. Like you haven’t got enough to be getting on with.

I know you feel I am trying to tell you how to do your job and that if I just let those who are paid do their job it would be a whole lot easier.

(I know you’ve done ‘training’ it says so on your lanyard)

I know you just want this sorted because you have a ton of work and a ton of other kids to deal with.

But the thing is, I live with my child. I am with them day and night since the day they were born, so what I am trying to say (politely) is I know my child.

So please, before you fire up the printer and dust down the laminator I want you to know that this will not replace human connection.

Because all humans need connection, my child needs co-regulation.

Trusting relationships are how my child will feel safe and calm.

My child needs time and connection and will be seeking safety from a consistent adult.

While you ask ‘what’s wrong?’ you are getting it wrong because you are not seeing their day through their lens.

That visual support is another demand in a stressful environment that is not designed or considering the neurodivergent experience.

They are stressed, they don’t know if they are ‘in the blue’ or ‘it’s too loud’ they just want to go home.

I mean, if you were upset and hated your job and spent most of it left alone in the corridor, would pointing at a smiley or sad face make you feel any better?

So please do not give them a colour coded emotional scaling system to point at while they’ve been sat alone and dis-regulated.

Give them time, give them validation, give them comfort and calmness, give them connection. Give them human connection.

(And by the way, no one likes clip art)

Yours,

The professional parent/care giver.

Ice creams, smiling sticky faces, anoraks and caravans.

Those families that actually all go out for a walk.

Yesterday it was happy, achieving exam result photos.

The other week it was prom.

The reminders.

The ‘where we are not at’ But it’s okay, you’re okay.

We’ll just hang out here a bit longer.

Food delivery, home shopping, Minecraft, Lego.

Okay it doesn’t make for great photos for grandparents or thoseFacebook friends (when did they last check in on you anyway?)

But this is our world and it works.

So happy summer holiday people wherever you are, we get it.x

“It’ll be fine!”

“They’ve had a great day!”

You give me positive spins and tell me not to worry.

This is not a safe space.

“Have you told them about Albert Einstein and Greta Thunberg?”

“They are not like other Autistics I’ve met”

You’ve only read the headlines and you are not getting this.

This is not a safe space.

“Would they like a visual timetable?”

“Or an exercise ball?”

You want a quick fix. I know you want me out of here.

This is not a safe space.

I choose to look okay, to seem pleasant and compliant because I need you to help me, even though you don’t understand and I know you won’t help because you don’t get it. So I need to seem nice and cordial and get out as quick as I can.

I don’t want to seem ungrateful so let’s get this over and done with.

You don’t have a choice; you are stuck there all day. No one gets it; you can’t escape so it’s about getting through the day and until you get home, to your safe space.

“Are you in the blue?”

This is not a safe space.