A Friday night conversation

I say bad things sometimes.

To people I love.

Like tonight.

My son is anxious because we still don’t know when he can start his new High School.

To recap, for those who don’t know the story, my 11 year old has additional needs. He is autistic and has difficulties regulating his behaviour. The council have allocated him a school nearly an hour away but have provided no passenger escort to take him there, expecting me to do it. I refuse,  because of his track record of aggressive outbursts towards me whilst in transit.

And here we are in limbo.

Him not at school, me fighting the council.

The system.

Again.

My son understands and appreciates my predicament. He acknowledges his own struggles and realises that’s why he’s been placed at a specialist school in the first place.

But he also knows his peers are at school and he is not.

And it makes him sad, in a no-man’s land. Bored, lonely. Envious.

He’s quite rightly, angry about it.

Despite his difficulties he has always loved school. He is bright and sociable.

He’s nagging me. Asking me to tell him when he will be able to go. In true autistic fashion, he demands to know ‘in percentages’ the chance he has of being able to go to school. I tell him what I know - that it’s with a solicitor, what I imagine will happen.

“How long will it take to be sorted?”

He wants certainty, and certainty I cannot give.

“When? I need to know when I’m going to school!”

He’s badgering and pushing me.

“I will be able to go eventually, won’t I?”

And then I break. Snap and say it.

The bad thing.

“Look - this is not my fault! Don’t you think I wish I had a kid I could just stick on the bus to Calder High like everyone else?”

The taboo has been spoken.

The thing mothers of kids with additional needs are not supposed to say.

That we just want ordinary.

‘Normal’.

It’s not that we resent the additional needs - we all have some shit going on after all, right? It’s that we just want the things most people take for granted. Want our kids to have friends, go to sports clubs.  I want for him whatever kids his age usually have. And yeah, the choice of attending the local high school travelling independently on the school bus with everyone else is definitely up there.

Instead, whilst trying to parent, myself and others like me are met with blocks, a barrage of form filling, meetings, constant fights for everything.

“I’m sorry I said that. This isn’t your fault.”

I say, but already his heart has ran, embedded my spear of pain within it. This horrible thing I’ve said.

“I wish I’d never been born.”

He says. And how that pierces me back. My sweet, smart, beautiful boy.

I don’t wish him away, but I do wish for his sake, he had a different mother. One who coped better with it all. Enjoyed it more. A martyr type. A ‘my kids are my world’, ‘don’t they soon grow up’ type.

One who isn’t me - selfish worshipper of Easy Street. Never one to climb a mountain for the view when I can get a cable car up or buy a postcard. He deserves better.

But somehow, we’ve been entrusted by chance or design to each other.

“Look, I’m trying. I really am. I’m really trying to sort this out so you can go to school.”

I say. If only he knew how much. How much time and energy it is costing me. How many emails, appeal forms, all the money spent on legal stuff.

How this keeps me awake at night.

“I know you are..…..”

He clings to me like a monkey, as though he really does know this.

And I to him.

“I do love you, you know.”

I’m awash with this love, yet prickling with guilt. Am I being unreasonable not agreeing to spend 2 hrs in a confined space every day with him, when he has attacked me on multiple occasions on the previous 15 minute journey? When he had 2:1 restraint trained support staff at his previous school? When he is only two inches shorter than me now at 5'4 and on the cusp of puberty? Should I just do it? Agree to that stressful journey on an ongoing basis?

No!

I get mad.

Why am I being made to feel this guilt? If he was a kid in a wheelchair the council would find him an escort. Why should the nature of the condition allow them to cherrypick who they assist? Why am I not entitled to get a full time job as other parents do? Why can he not attend a nearer school? So many whys.

The same answer.

Life, is not fair, Julie.

And how we want it to be fair for our kids.

More than we do for ourselves.

I recall reading the book by psychologist Oliver James ‘They f*** you up- how to survive family life’. It’s a book that acknowledges we all fuck our kids up in some way. Just as we ourselves were fucked up by our own parents to some degree. The best we can hope for, it supposes, is to just do it to a lesser extent because it cannot be avoided.

I imagine him making his home movie of this scene, to rerun in his head in future years, with popcorn. When it replays for him as an adult, will he just hear *the line* or remember the hug? The way I apologised, told him I loved him?

“I just wish I could go back in time. When it was good.”

He says with a depth that ‘Autism experts’ would have you believe doesn’t exist in kids like him. It can, and I am witness it does.

He is nostalgic for being 7 when he first started his old Primary School. How he enjoyed those first few months. Mentions how the lockdowns interrupted that winning streak he felt he was on.  I marvel at his self reflection, so tuned in to himself at such a young age.

“I get that. I’ve felt like that loads of times in my life”

I tell him.

“But you will have good times again. They come and they go.”

“I just want to start life again”

He says, the way 11 year olds shouldn’t.

And I nod, because I get it. I wish I could too.

We hold each other and cry whilst I try my hardest to be strong. The adult.

“It won’t be like this forever, you know”

I say, as I’ve said a million times to myself.

“You have some wonderful times ahead.”

I scrat around like a spin doctor hoping to pull a much needed pearl of wisdom from my addled brain.

“And even if things do have to change, every ending is a new beginning.”

There.

And one of us, it seems, believes it.

One of us falls asleep, exhausted.

One of us.