Our children are as complex and nuanced as any human being but post diagnosis I felt the stereotypes close in.(we are products of our own environments and cultures)

But we all get sent on the same parenting courses with the other parents whose children have a diagnosis and our children get to go to Lego Club.

I guess when the end goal is to fit one system, a formal education then it is simpler to pigeon hole and use those ‘supports’ but what happens when they don’t work?

I think I would have preferred a course on ‘When the shit hits the fan’ because I think until we create a flexible and individualised learning environments for our children then a lot of us will be needing help to navigate the next bit- the “now what?”

Bad things happen.

We all carry our wounds.

We all have ‘that terrible thing’ that happened to our children.

So we write emails, we make phone calls. I even spoke to our local MP.

How can people be so unkind?

Why can’t they just say sorry?

But what happens?

They argue the toss.They read the formal script.They close ranks.

Meanwhile I got sicker.. My child was ill and I was ill.

I wasn’t going to get them to change, they wouldn’t say sorry.

Oh yes, they will still argue and make everything a massive pain.But they won’t take my nice times.

They get paid to send those emails, I don’t.

So I get what I need.

I pick my battles.

I went to meetings, I hoovered, nodded my head, I listened to ‘professionals’, I hoovered, I talked about my child to people I had never met before and would never see again, I hoovered, I sat with other parents in the park and listened to their weekend plans, I made sure I had the right food stuffs, I went to coffee mornings, I hoovered.

I didn’t want to blamed and I didn’t want to be judged.

Other children went to school, other children could be helped.She contradicted sometimes, surprised us all, so it can’t be that bad. Why doesn’t she want help?

I didn’t know.

Maybe it was my fault?

So I hoovered.

What about the ‘Real World’?

What does this mean?

Whose worlds are the same as anybody else’s?

So why is this said about our children all the time?

Don’t we create our own lives with kindness and happiness?

I don’t mind what our child does as long as she has these..

Those same old questions..

By family or friends who don’t understand.

The ‘professionals’ who have immovable markers of ‘success’ for our children.They don’t know what to say.
Our journeys with our children can highlight the inflexibility of the systems of support who need to measure and evaluate them.

This isn’t helpful.

We lose friendships or move away from relationships as we tire of explaining our children and ourselves.
So we seek kind and supportive relationships who don’t judge and just accept. We learn more about different ways of being for our children to thrive.

We carve new lives for ourselves, with those who understand, don’t judge and support us.

It’s okay, I can fill out another form and write my name, address and date of birth AGAIN.

Sure, I’ll tell you everything over the phone for the third time in a month because even though it’s a bad story, I’ve said it so many times now it’s more like a script anyway.

Yep, I’ll wait another six months for an appointment that will probably be a fifteen minute phone call.

Oh well, I didn’t get your name or department and it was Caller ID and I just told you stuff and you promised to follow it up with an email confirmation and you didn’t.

No, it’s fine honestly. We can reschedule for next month even though I arranged child care for this appointment and you cancelled on the morning of the actual appointment.

I thought I had already told you, but now we have to go through all this again?

Honestly, it is fine.

Because..

One day I will lay on a beach on a Greek Island with a pile of books and glasses of ice cold Rosé. (NB. Happy Places do not expire and you will will defo go there in the distant future, just can’t say when exactly. Promise.)

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When I am sat in a room of ‘professionals’ and my child is not supported and my concerns about this are reported as ‘mums concerned/anxious’ you have not seen me as an equal. You have not listened to me.

You have not heard me.

So please..

This email has been sent securely..

What do we become?A waffling sentence of abbreviations and fragmented sentences.Most of the time we just keep quiet. We have so much to say but we keep it to ourselves.Other times we just have to get it off our chest, we need to share the maddening systems we are dealing with, that terrible week of nonsense that consumed us.But once we start we can’t stop.I mean, where do you start?(I used to talk about books and nice things)

“Have you tried a visual timetable?”Sometimes you just want to talk about how it really is but it is always about a solution, it is always about fixing.I just wanted to talk about how lonely and worried I felt that holiday but apparently all of life is fixable and it is usually involves a whiteboard or a visual timetable..